HERE'S THE LATEST NEWS...
Sunday, December 30, 2007
Feeling Better / Hi Matt!
Both Erinne and Kevin are feeling a little better.
Erinne felt well enough yesterday to go out to lunch with one of her dearest friends, Matthew C., who was here visiting from Tenn. She was so afraid that she was not going to be able to see him. (Erinne says thank you for the wonderful Christmas present -- Mom and Dad too!) Seemed like Matt & Erinne picked up right where they left off. I'll have to get the pics downloaded from my camera and get them up. We hope to see them when we go down to KY to see my brother and sister-in-law in March.) Matthew's friendship has meant so much to Erinne.
Thursday, December 27, 2007
Where Did This Come From??
We haven't been making any progress here so we went in to the doc's today. (Our regular doc is on vacation this week, so we saw a new one to us.) I have actually been worried more about Kevin than Erinne. Turns out they BOTH have pneumonia -- Kevin's is worse than Erinne's. They are now on antibiotics and Kevin is on 2 additional meds. They gave him a dose of steroids in the office. She told me I "waited too long" to bring Kevin in. Okay, but remember your office was closed for 4 days and besides, he's not even run a temp! (Neither has Erinne.) You usually run a temp with pneumonia, but not with a cold. That's what I was going by. He has lost 6 lbs, which he has none to spare, really. Neither are happy to have their vacation plans/hockey curtailed.
Today I have a sore throat and tight chest too. Heaven help us!!! I won't wait as long to drag myself in to the doc's, since there is no one else to play nursemaid here! Fortunately, the kids are out of school another full week.
Erinne's back surgery has been postponed, again.
Monday, December 24, 2007
Ah, such a 'lovely' time of year...... Erinne (and Kevin) are both sick. I am pretty sure it is RSV. (Erinne's SATs were lower last night too.) Erinne's 'crud' coming up had streaks of blood in it today. (Not from nasal suctioning -- I don't need to do that with her.) I am alternating doing neb treatments on both kids and have both CoughAssists out. Pulmozyme and Xopenex (although not at the same time!) are working well for both of them, along with Motrin for Erinne and Advil Severe Cold for Kevin. They are both holding their own right now, so we are staying put. Merry CHRISTmas and God Bless Everyone!
Saturday, December 22, 2007
Sorry this has taken me so long to update. As is the case for you, I'm sure, things are crazy here and I am very tired!!
Medically, Erinne is doing MUCH better on her new Synchrony bi-pap, thanks in HUGE part to Lila Cherry and the kind, generous folks at Primis Healthcare Systems in Troy, MI. They cared, when GM's Blue Cross/Blue Shield (our insurer) did/does not. BC/BS saw no need to make any changes in Erinne's machines in spite of the well documented changes in Erinne's condition, and abnormal test results. Lila Cherry & Primis saw a little girl in need and beaurocracy be damned, stepped up to the plate. I am forever indebted to them. THANK YOU LILA and PRIMIS!! (And Thank you to Duncan Jones, Erinne's music teacher, for bringing us together!)
Erinne's energy level is slowly returning to normal. She is napping much less (if at all) and is in school most days for full days (as opposed to the 1/2 days she was doing). Her iron blood tests all came back normal, so pernicious anemia was not the problem. I still don't have the detailed results of the sleep study so I don't know if Restless Leg Syndrome is playing into this (she is still up quite a few/many times at night) but her oxygen levels have improved greatly and she hasn't needed supplemental oxygen since starting on the Synchrony. Her spine surgery has been rescheduled for Friday, January 4th. Her surgeon is having a difficult time getting a bed in the ICU and a surgical suite booked at Children's Hospital of Michigan so we are going to 'try' it at Providence Hospital in Southfield. Hopefully, Erinne will be in just 1 day if all goes well.
She is excitedly looking forward to Christmas and is happy at the prospect of seeing some friends that she doesn't see at school -- especially Olivia, Alec and her very special friend, Matthew C. who will be up from Tenn. Quite the social calendar already planned out! (I'm glad I could squeeze surgery into that busy schedule!) Now I've just gotta keep her healthy. She woke up with a sore throat this AM so hopefully it is just a passing thing. Her brother is battling quite an upper respiratory bug right now and I sure hope it doesn't get passed on to Erinne.
Erinne has been reminding me that I'll be "27" tomorrow....sweet girl that she is, she's already figured out that I've reached the point where you start subtracting years, rather than adding them!
Sunday, December 16, 2007
Erinne's In The News!!!
Please be sure to check out Erinne's Detroit Free Press story which appeared in today's paper. Click on this link
(E-mail me at Erinnesmom@gmail.com if you have problems with this link.)
Saturday, December 15, 2007
Oh What A Night!!!! THANK YOU, CHRIS OSGOOD!!!!
Saturday was a dream come true for Erinne. A day filled with hockey....first on deck was her wheelchair hockey game (and 2 classmates surprised her by coming to watch her --- thank you Ryan (for the 2nd time this month!) and Anthony), then her brother Kevin's game, and finally, The Red Wings Game!!! (Tickets were a Christmas gift from her dad.) Their game was awesome and we had great seats, but the icing on the cake happened after the game. Erinne got to spend time chatting with her beloved hero, goalie CHRIS OSGOOD!!! He sat down next to her and was so patient and kind with her. He told her he saw the sign she was holding up for him during the game (It said "My 1st Word Was 'Ozzie' ♥Erinne♥") and he thanked her for the birthday card she made for his birthday last month and mailed to his house. He autographed her sign for her and posed for pictures. Latte threw herself down at Chris' feet and begged for a belly rub, which he obliged. It was 15 minutes of pure Heaven for Erinne. I gave him her 'business' card, which he put in his wallet and promised to visit her website. She practically floated out of the arena. She also saw the Immortal Captain, Steve Yzerman with his family on the way out and she was able to stop and talk to him and grab a couple of pictures too. He mentioned seeing Erinne's sign up on the Jumbotron (big screen) during the game. I also gave Steve one of her cards and he promised to check out her website as well. She was also able to get a picture with Henrik (Hank) Zetterberg. (While Erinne was chatting with Chris, Kevin was able to get "Mr. Hockey", Gordie Howe's autograph, along with coach Mike Babcock and General Manager Ken Holland, so it was a great night for him too!! Erinne was laughing later because she pointed out to me that Kevin was speechless when he met Hank (his favorite player) .... and those of you who know my 16 yr old motor mouth son is NEVER short on words.)
We had a winter storm hit during the game and drive home was an absolute nightmare, but it was all so worth it to see the pure joy on her face.
It is things like this that keep Erinne going........
Tuesday, December 11, 2007
Today we met with the pediatric neurologist at the University of Michigan-Mott's Children's Hospital in Ann Arbor who specializes in sleep disorders in children. He had not personally reviewed her sleep study yet and said he would do so tomorrow and call me with the results. He did want Erinne's iron levels drawn because there is a specific type of anemia (even in its mildest form) that can cause Restless Leg Syndrome (RLS), which is part of her night-time sleep complaints. Erinne has had her iron checked repeatedly and recently so I'm not expecting to hear of any abnormal results. Tomorrow we go back out to Ann Arbor to meet with the pulmonology team.
Erinne's insurance (BC/BS -- GM) is still dragging their feet about getting Erinne the new bi-pap (Synchrony) so that part of her treatment plan still isn't implemented. So a wonderful kind (so far anonymous) person is donating a brand new Synchrony and a new mask to Erinne, and it will be delivered tomorrow morning!! We are SO GRATEFUL for this kind stranger to care enough about Erinne to want to help her get better. Erinne's music teacher, Duncan Jones, put us in touch. Thank you so much, Duncan!! I'll update again tomorrow after the pulmonologist appt. Thanks for the prayers!!
Sunday, December 02, 2007
University of Michigan Hockey ROCKS!!
Erinne had a BLAST at the U of M hockey game!!!!!
The wheelchair seating was great and Erinne was very focused on the game. Those are some rowdy fans there! Michigan beat Ohio State 4-2. After the game, she was able to meet the team and gather autographs. The players were all very nice and polite with her. Such nice young men! One of the assistant coaches mentioned seeing her across the ice and commented that she was getting a lot of attention! (He had never met her before.) One of the dads told us that the team visits Mott's Children's Hospital on Thursdays and to let them know when she is an inpatient next time. We enjoyed our visit and drive out with paramedic Jessica (who hooked us up with the team) and her Mom, Karen. It was quite a white-knuckle drive home, as a winter storm hit and it was alternating between snowing and icing. The freeways were terrible. I think we topped out at 40mph. Erinne was falling asleep on the way home and crashed into bed as soon at we hit the door. She slept until noon today and was back in bed as soon as we picked up Kevin from hockey at 4pm. Her back was really hurting her today. I think she needs to have her back surgery SOON! Hopefully well have some news tomorrow from the doctors.....
Friday, November 30, 2007
Still In A Holding Pattern......
Well, its Friday and no appointment with the pediatric neurologist yet. I did receive an email that the neuro did review Erinne's sleep study and found the daytime one to be "very abnormal" and "is committed to getting her seen as soon as possible." The medical supply company called me to tell me that GM Blue Cross won't pay for this other bi-pap (Synchrony) because it is too similar to the one she currently has. (Gee, does this mean we are going to plan B?!) I am still waiting to hear what the pulmonary docs work out.
I spent an hour on the phone this evening with Erinne's pediatrician (who I am proud to also call my friend) and felt better after talking to her. She told me this particular neuro doc is excellent and very smart and she has sent other patients to him that were difficult cases and he did a good job with them. She is having her office call as well to try and get the appt. scheduled. We also discussed Erinne's breathing issues and she made a couple more suggestions as far as the new meds she is on. I am so lucky to have her looking out for Erinne. I trust her 110% .... and I have never said that about anyone before. With her, I feel like I can just be Erinne's Mom and not have to be Erinne's Advocate, and not have my bull____ detector on high alert to see if I am being told the truth.
Erinne's heart rate continues to worry me....she's been very high while sleeping, and then last night, she dropped into the 50s (yes, that is less than 1 beat per minute.) I decided that until I feel like she has stabilized (or that we somehow miraculously qualify for nursing care at night), I need to plan on sleeping during the day while she is at school so I don't keel over from a heart attack from running on empty.
On Saturday, Erinne has been invited to attend the University of Michigan Hockey Game by one of the player's families. They will be playing Ohio State. I think she will also get to meet the team afterwards. She is VERY GEEKED!!!
Wednesday, November 28, 2007
I am sorry this has taken me so long to update on Erinne's testing...it has been a rough couple of days for me. I don't know if I am "losing my edge" or am just exhausted, but I am worried sick about Erinne. (And it goes without saying that this is very hard to do alone.) And my gut just is telling me things are not "okay." And my gut has not been wrong - yet. They have identified some problems she has, but I feel like we are still missing something ---- an important piece.
So, what we know so far.... The pulmonary function testing (PFT), as I mentioned before, shows she has significant Reactive Airway Disease (RAD). We knew she had some problems before (along with restrictive airway, because of the SMA and its effects on the intercostal muscles between the ribs that you need to breathe), but not to this severity. That is treatable and should respond to drugs. Erinne has been on several breathing medications in the past when she has been sick, but now it is clear that she needs them every day. She'll need to use 2 inhalers and 2 breathing treatment medications (in a nebulizer) every day and at least a third nebulizer medication when she is sick. The CT scan showed no thickening of the lung tissue or any new problems that we weren't already aware of. It did show that the diaphragm is riding high on the left side, as I had suspected, but I was not given a clear answer as to whether it was HIGHER now, than it has been on previous x-rays/scans. Her sleep studies (remember she had 2 -- daytime and nighttime) were concerning...the daytime more so than the nighttime. The nighttime one showed that yes, she is having difficulty maintaining her oxygen levels while asleep on bi-pap (especially while sleeping on her right side with the damaged diaphragm side "up"), just as I have noted at home. The daytime study was highly suggestive of narcolepsy....which is something you don't usually see in a child. It is very concerning and the pulmonary doctors are trying to get Erinne in right away this week to see a pediatric neurologist who specializes in sleep disorders (out at U of Mich.) I did agree to a compromise to try the Synchrony bi-pap that they wanted us to try to see if that, along with the new medications, and whatever else the neurologist comes up with, will correct her problems. I agreed to trying it for a couple of weeks....and if we don't see improvement, then we will switch over to the ventilator that I want her on. I said that I did not want the insurance to buy the machine -- just rent it for now. (I am worried about the changes in her dad's UAW-GM insurance come January 1st, and what they will no longer cover as well as what cuts the state is going to make in the Children's Special Health Care insurance she also has) and what kind of coverage she is going to be left with when the dust settles.
Erinne still struggles at night with an elevated (for her) heart rate, and dropping oxygen levels and seems to need oxygen more frequently. I am very, very worried about the strain this is putting on her heart. I inquired about another cardiac workup (she had one a year ago when I noticed that her heart rate was dropping too low while sleeping (in the 50s, and occasionally 48-49) but that showed that everything was within normal limits and at this point, they don't see a need to repeat those right now. But I go back to that "gut feeling" again. So now we wait for this next specialist to fit her in.
Hopefully the machine change will take place in the next few days (unless the insurance wants to play more games and drag out the paperwork) and I'll see some changes soon. The new meds are already on board. But I find myself staring at her monitors most of the night, afraid to fall asleep. (And the insurance says we don't qualify for night nursing so that I could feel like I could safely sleep.)
Oh --- and the scoliosis surgery (rod lengthening) and been indefinitely postponed until I see some improvements in Erinne. Which means her back pain continues.
And now since it is almost 2am, I guess I will *try* so get a little sleep. I'll be up with Kevin at 5:45am to make sure he gets off to school. Hockey on Tuesdays runs until 11pm and it is 12:30am by the time he gets to bed. So I have to keep pointing him in the right direction on Wednesday mornings!
Please pray for Erinne.
Saturday, November 24, 2007
UNFORTUNATELY, we are still waiting for the test results. They called me on Wednesday at 1:30pm when I was in the "back forty" of the grocery store, so my phone didn't ring -- it went right to voicemail. The message was that they had the test results and wanted to discuss them. They would be in the office for another hour -- until 2:30pm. Then they would be gone until Monday. So guess what time I got out of the grocery store? Yep -- 2:30pm. So now we wait some more.
Erinne had a bit of a rough Thanksgiving. She started with a stomach ache all night Wednesday night and then spent all day Thursday either on the couch or in the bathroom. So was so looking forward to Thanksgiving dinner! She was sound asleep at 7pm (after getting up at 11am!) She is better now -- still having some stomach cramping, but not like it was.
Friday, November 16, 2007
And Now We Wait.......
We finished up the last of the tests today --- pulmonary function test (PFT), CT scan of the chest and an ultrasound of the diaphragm. I was expecting a fluoroscope of the diaphragm, which is like a moving x-ray, and allows you to see the whole diaphragm, moving in real-time. However, when we got there, the order said an ultrasound. I was not happy with that because it was not what we agreed upon. In any event, the tech called the doc in to look with her at what they were seeing. He said he couldn't tell me if the diaphragm had changed, without seeing what previous x-rays looked like. I told him there was another fluoroscope on file to compare it to. I also told him I was told that she was having a fluoroscope, not an ultrasound (hoping that he would decide to order one. No luck.) The CT scan ended up being with contrast (dye), which necessitated an IV. The CT techs could not find a vein so they called in the IV team. The IV nurse had difficulty as well and poked her 3 times --- including once in the shoulder near the armpit OUCH!! --- before getting a line in on the underside of her wrist, between the tendons (more OUCH!!) Finally, Erinne did sooooo well with the PFT. And interestingly enough, after taking measurements and then giving her an albuterol inhaler medication, she improved her results by 208%!! Oh my gosh!! I guess we will be using an albuterol-type medication from now on. (But I will certainly see what the pulmonologist has to say.) I will be calling the pulmonologist on Monday afternoon to see what the results from all of the testing over the past 2 days showed and also see what the plan is to get Erinne better.
I picked up bronchitis, ear and sinus infection this week and quickly got to the doctor's to get on antibiotics. I am hoping and praying that Erinne doesn't pick up the bug. But both she and Kevin have been sneezing and dealing with runny noses. Erinne is coughing stuff up too. She can't get sick!!! (Well, neither can Kevin!) Please keep them in your prayers. Thanks....
Thursday, November 15, 2007
Day at the Hospital
The first sets of tests are done --- the next set start at 12:30pm tomorrow (Friday). I don't have the results for the sleep study yet -- of course -- that's A LOT of data to download and interpret. Hopefully they'll put a rush on it and have it to Erinne's pulmonologist by Monday. Erinne didn't have a horrible night, but she didn't have a great one either. I think she was up 5 or 6 times. I don't know what her SATs were (all monitors are at the station) but I know they had to put her on oxygen because her SATs dropped too low (on bi-pap) and stayed there. The daytime monitoring involved her resting 5 times during the day today, 1hr 45min apart, for 30 minutes, with the head electrodes on, to see if she fell asleep -- and, if she did, what her brain activity was like. Well, she fell asleep every time, which is not normal. She even went into a very deep sleep within a matter of minutes of closing her eyes. That explains why she can't stay awake a school and needs a nap every day. More news tomorrow......I hope.
Tuesday, November 13, 2007
Frustration Sets In!!!
The nurse practitioner for the pulmonary doctor called and left me a message, telling me to call her in the morning at 7:30a BEFORE we left the house. So I called her office. She told me she had a conference call with the director of the sleep lab and the pulm. She gave the sleep lab director a detailed history of Erinne, including the 'sudden onset' of the fatigue problems. He felt she needed something called a Multiple Sleep Latency Test which would also measure her daytime sleeping needs, in addition to the overnight study. That has to be done in the sleep lab --- not in the patient rooms. He decided that he could fit her in Wednesday night, and the preliminary results to the pulm by Friday. So we are supposed to be in the sleep lab Wednesday at 8pm, and we wouldn't be done until 5pm on Thursday. Then she told me we could wait and have the other tests on Monday, or have them done on Wednesday, which would make for a long day. I've opted to get everything done on Wednesday so that they will have all of the test results by Friday and hopefully come up with a plan for us on Monday. They are going to try to schedule them earlier in the day so that we can come back home and rest before going back to the hospital. Then I get a call back, telling me that all of the tests have been scheduled for Friday. (I was hoping to have her back to school on Friday!)
I am disappointed that this all wasn't done sooner ---- like when I first notified them that she was having problems. I feel like I had to tell them we had a surgical deadline in order to get things moving. But now, because things have been pushed right up to the deadline with no plan of action in sight, I can't in good conscience allow Erinne to have surgery on the 21st, knowing there is a preexisting, unresolved pulmonary issue. The absolute earliest that I will know what is going on and what the plan is will be Monday or Tuesday. Then of course Thanksgiving is Thursday, so the week is shot as far as getting anything done. This delay also kept Erinne out of school unnecessarily for 2 days this week, which doesn't make me happy either.
So, that's the update, such that it is.
Monday, November 12, 2007
Admission Delayed By One Day
Admission has been bumped to Tuesday, because the bed won't be available until the late afternoon. They won't do any tests after hours, so they are just going to admit her tomorrow. They will start Erinne's first test at 9am, get the CT scan and fluoroscope done and then start the sleep study Tuesday evening. She's gonna be wiped out.
Sunday, November 11, 2007
Heading To The Hospital
We're packed for the hospital and anxiously waiting for the call (between 9:30-10:00am Monday) to tell us to head on out to Ann Arbor University of Michigan - Mott's Children's Hospital for our admission. Just have to make sure the hospital didn't fill up over the weekend and Erinne's bed is in use. We plan on being there for the week. Erinne's little dog Henri is farmed out for the week and Kevin will be staying with his buddy Brandon and my good friend Carolyn and her family. He'll be by after school every day to take care of the rest of the zoo -- the 2 cats Ernie & Oscar, Erinne's bird, Ozzie and the rabbit, Snowball. Latte will of course be going with us. I will post a note here daily from the hospital. Please keep Erinne in your prayers.....thanks.
WWednesday, November 07, 2007
Things are about the same...... Erinne was awake earlier than usual today for school. She attended a half day and managed not to nap at school, but came home quite wilted and immediately had to lay down on the couch, complaining of pain and fatigue. She was supposed to go to OT at 4:45p, but she said she could not even sit up in her chair for the car ride there (25 min). So I had to cancel. She was in bed at 5:00pm, ate dinner in bed and watched a movie and was asleep at 6:30pm. She was awake 3 times between 6:30 - 9:30pm and her heart rate was elevated higher than usual for her while sleeping. Monday can't come soon enough. We need answers.
Thursday, 11-8-07: Not a good night. She was up 11 times between 8:00pm-6:30am ... complaining of pain in her back, hip or shoulder, needing to be turned or pain under her nose from the bi-pap mask (she has a raw spot). She didn't make it in to school at all today, and fell back asleep until 1:00pm. (essentially 6:30pm - 1:00pm) So far she has stayed awake about 3 1/2 hours and has kept her oxygen levels up off bi-pap. I'm tired!
Monday, November 05, 2007
Scheduled for Hospitalization
Well, we are going to admit Erinne to Mott's Children's Hospital in Ann Arbor on Monday, 11/12 for several days of testing, including a sleep study (over several nights), CT of her lungs, and fluoroscope (real time, moving x-ray) of her diaphragm (the left side which was 'plicated' or tied down, back in 2001, because it no longer functioned. It was damaged by the 3 chest tubes she had.) We are trying to find a reason for the chronic, intense fatigue she's had for the past almost 2 months. I think what we are seeing is the cumulative damage from the plicated diaphragm, ARDS and 16 pneumonias. I am hedging my bet that she needs to be on a vent, with bi-pap type settings, to help her breathe better (more volume, more variables), and take quick breaks on it during the day at school. I think the quick daytime breaks during the day will be key to getting her stamina back. I am asking the pulmonary staff to do something they have never done before --- put a SMA type 2 non-trached child on a vent. We are trailblazing --- and hoping they will take our lead and join us. Erinne may be the first SMA type 2 non-trached child on a vent in Michigan, but she won't be the last! Please keep Erinne in your prayers. She has got to get better rested for her next back surgery, which is scheduled for Wednesday, November 21st -- the day before Thanksgiving.
Wednesday, October 31, 2007
HAPPY HALLOWEEN !!
Erinne had a WONDERFUL Halloween evening!!! She went trick-or-treating with her good friends, Melissa and Jessie (sisters). We went to their house and trick-or-treated through their neighborhood. I was shocked at how many people in the neighborhood knew Erinne! (The kids in this neighborhood attend Fiegel Elementary, but it is a ways away from the school.) It was still light out (because Daylight Savings Time hadn't ended yet) and the temp was in the 50s -- so it was perfect! No winter coats! Melissa and Jessie were so kind and sweet and caring towards Erinne. Most houses had steps, so they would either ask the homeowner for a treat for their friend, or point her so the homeowner would come out and put a treat in Erinne's bag. They always waited for Erinne to get her treat before they went to the next house. (Some times when there were bunches of kids, they would cut in front of Erinne, delaying Erinne's turn at the door or delaying her trip leaving the house.) After they were out for 1 1/2 hours, they went inside and did a "trade & swap". It was cute to watch. I think I enjoyed the night as much as Erinne did. THANK YOU SO MUCH, MELISSA & JESSIE!!!
Tuesday, October 30, 2007
V-A-N is a four letter word around here!
I can hardly believe I am writing this ..... the VAN BROKE DOWN AGAIN!!!. I was driving down the freeway after dropping Kevin off at hockey, 9pm .... Erinne, wheelchair and Latte of course with me. Managed to get it to the shoulder close to an exit. This is a freeway where 75mph is s-l-o-w (I-275, for those of you who are local.) My van was rocking from the cars blowing by -- scary. My friend's husband and their 16 yr old son came to help. The 3 of us managed to lift Erinne's 400lb chair into the back of their minivan. They got us home, and the tow truck took the van back to the place that was supposed to have fixed it. It will be interesting to see what story the mechanic comes up with tomorrow. (And if you a wondering why I took it back to the same place (I am wondering about the wisdom of that decision too) I don't want to have to pay for something that they should have already addressed.)
Some days, life around here reaaally sucks, ya know? I feel pretty beaten up.
Tuesday, October 30, 2007
Hospitalization on the Horizion
Well, it looks as if Erinne will be admitted to the University of Michigan - Mott's Children's Hospital for a couple of nights of testing and study, trying to determine why she continues to have oxygenation problems, and possibly (probably) transition her from her bi-pap to a ventilator. We're just waiting for a bed to open up. SOMETHING has to change ---- she can't continue on like this.
Friday, October 26, 2007
Spoke To Soon!!
Ah, life's ups and downs..... Erinne has done a 180* turn on me. Last night was a horrible night. Erinne was exhausted...fell asleep at 7:45pm. Then woke up at 9pm, complaining of pain, and not being able to find a comfortable position to sleep in. This went on till 10:30pm. I must've gone upstairs 12 times during that 90 minute period (yes, that's almost every 8 minutes.) Then she woke back up at 12:30am for another hour, same complaints. Then at 5am, her 02 monitor alarms started screeching (yes, that's a startling awakening!) because her oxygen levels started dropping (while on bi-pap) so I had to turn the 02 on. Needless to say, she didn't start school on time today. She woke up at 10am, seemingly fine, so I took her in at 11am. No problems at school, and she didn't need to lay down. When she got off the bus, she told me her back was killing her and she had to get out of her chair and lay down. Kevin put her on the couch and I gave her pain meds. She started yawning and I asked her if she wanted to lay down in her bed. She said, "Can I?" So Kevin carried her upstairs (Thank God for Kevin's strength!) I got her tucked in, kissed her forehead....and realized she was running a fever! She fell right to sleep. I ran out to get some meds for her while she was sleeping. Kevin called me to tell me her monitor was alarming because her heartrate was 140. I raced back home, and checked her temp again and it had gone up to 103. (She is still on antibiotics from her ear & sinus infection last week, so this is clearly viral.) So she got a cool washcloth wipe down and some tylenol (not happy with that!) Interestingly enough, her pediatrician called (she's on vacation) just to check in and see how she's doing. It as nice to be able to talk things though with her and see if there was anything that I missed that I could do. (Unfortunately, there isn't.) So she missed her school's Halloween party tonight, which she was very disappointed about. But she's feeling so bad that she isn't complaining much!
Wednesday, October 24, 2007
Feeling a Bit Better
Erinne made it to school today and lasted the whole day at school, and didn't have to rest. It was kind of funny this morning .... she was so mad at me. I can't recall ever seeing her that mad. She informed me that she was still too tired to go to school and needed to sleep longer. (She had a really good night so I didn't feel too guilty about making her go. She didn't go at all on Tuesday because of fatigue.) She refused to open her eyes the entire time I was washing her face, as I carried her to the bathroom, then out of the bathroom, back on her bed to get dressed and then finally carrying her downstairs and setting her in her wheelchair. When the bus arrived and she left, she wouldn't say good-bye --- just talked to Latte. I watched from my door as she was lifted up on to the bus, and waved good-bye. No expression, no acknowledgement. Quite funny, coming from this "angel." So she gets off the bus at school and her nurse Susan called me to tell me she was madder than a hornet. So uncharacteristic for Erinne. I met her at the end of the day at school, because I had her IEP meeting. She was all smiles. I commented that she was sure a lot happier than when she left this morning. She told me "I WAS TIRED!" I asked her if she saw me waving good-bye as she was boarding the bus and she told me, "Yes, I saw you waving, but I wasn't going to wave back --- I was mad at you for not letting me sleep!!" Every once in a while she does actually act like a typical ten-year-old!!
Monday, October 22, 2007
Kind of a Downer of a Day
Time for a bit of an update.... First of all, Erinne has been having problems with her oxygen levels again. She went 2 weeks without needing supplemental oxygen while sleeping. Her nurses at school said she was back to her 'old' energy levels. Then she started slipping back into old patterns and needing her bi-pap and naps at school. Then on this past Thursday and Friday, I noticed her heart rate was elevated again while she was sleeping and her nurse noticed the same thing. Sleeping with a heart rate in the 130s-140s is NOT normal for her. No other symptoms, until she complained that her ear felt plugged. So on Friday, I took her in to see her ped and she said Erinne's left ear drum looked like there was pus behind it. She also felt that Erinne was battling a sinus infection. So she is on 800mg of Augmentin a day for 2 weeks.
Erinne also has something else going on (probably for a month) that it driving me insane and no one can quite figure it out. It seems like Restless Leg Syndrome, where she wakes up frequently crying and thrashing about, and complaining of feeling 'squirmy' and 'crawly'. Her ped and neuro docs decided to try klonopin. She has been on it a week and it is NOT working. Every night it seems like it gets worse. She'll be asleep, but starts crying and screaming for me, and then thrashing around. Even when I go to her (I swear, sometimes every 15 minutes for 2-3 hours) she isn't awake and then when I wake her she has no idea why she is crying. I reposition her over and over, massage her hands and feet, check her stomach for air, give her pain meds, change bi-pap masks, turn the fan on her, set her bed to vibrate mode, play soothing music, etc.....nothing is helping. I feel like I am about to lose my mind. I know it is not her fault...she isn't even awake.....but I feel so frustrated that I can't fix this. I can't keep medicating her with pain meds just to get her to get past this and into a deep sleep. She is scheduled for a sleep study, but the hospital doesn't have an appointment available until December 15th. I'll lose my mind before then.
So that this isn't a total downer of a post, Erinne's serial casts on her ankles came off on Wednesday (just 10 days after they were put on) and she made a ton of progress --- so much that she didn't need a next round and will now be refitted for AFOs (leg braces.) That was great news. Well since it is past 12:30am, it's time to drag my sleep deprived body off to bed....
Friday, October 12, 2007
THE FIRST FUNDRAISER KICKS OFF!!!!!!
To help Erinne’s family start to save for a new van and to cover the costs of medical procedures not covered by insurance, “Erinne’s Neighborhood Moms” together with the Fiegel PTO will be sponsoring: A Holiday Wreath Sale with all of the proceeds benefiting The Friends of Erinne Trust Fund We will be selling both the Classic ($20) and the Victorian ($25) wreaths. In addition, wreath hangers will be available for $3. Final wreath orders along with your payment are due Monday, October 29th . The expected delivery date will be sometime during the week of November 12th . We will notify and arrange convenient pick-up times once the wreaths have been delivered to the school. [Erinne and mom Suzanne will deliver wreaths ordered.] Checks may be made payable to the Fiegel PTO. (39750 Joy Rd, Plymouth, MI 48170.) If you have not ordered a wreath in years past this is the year to do it. The wreaths are beautiful and well constructed. They are a festive addition to any door or wall. They make excellent gifts that will last well beyond the holiday season.
Monday, October 08, 2007
Well, the casts are on both feet/ankles -- not happily. Erinne was tearful on the way to the doctor's office. She never does that, even when we are on our way to surgery. She has been in quite a bit of pain since she has gone to bed, from her feet and the fact that I cracked her tailbone at the doctor's last week, trying to put her on the toilet for a urine specimen. I have given her every pain med she can have and it has not helped. She is sort of asleep, but her heart rate is elevated, so I know it is not a good quality sleep. My poor baby.
Sunday, October 07, 2007
On The Mend??
I hate to say too much yet....but Erinne *seems* to be better. We had a wonderful weekend visiting with my brother and sister-in-law who drove up from KY in their beautiful motor coach (its as big as a house!!) to Ypsilanti to a KOA campground that has a great Halloween weekend program. Erinne loved being with her cousins, especially Rachel, who is just a year younger. I wish we lived closer so the girls could spend time together on a regular basis. My sister and her husband and my niece also came (from Chelsea) for the weekend, as did a couple of my cousins and 2 aunts). Erinne slept until 2pm today, trying to catch up on her sleep. Tomorrow afternoon Erinne will be getting casts on both of her feet/ankles because they are starting to contract/turn out. Casting is the easiest and quickest way to correct this. I'll know more tomorrow, but it should only take a couple of weeks. Her legs are badly contracted and we will probably tackle that next. That will be a much harder (and painful) thing to fix. She sees her pediatric neurologist/physical medicine doctor tomorrow and her orthopedic surgeon on Wednesday to get spine x-rays and schedule her next surgery. I am going to ask for the surgery to be scheduled on Nov 20th, so she'll have the Thanksgiving holiday to recuperate. (I wish we could go to KY and spend the holiday with my brother, but Kevin always has a hockey tournament that weekend.) Thanks for stopping by!
Wednesday, October 03, 2007
Just Not Gaining Any Ground
Well, we've sort of stopped making small improvements and have back-slid a bit. Still sleeping 16 +/- hours a day, usually on bi-pap and oxygen. She felt well enough to attempt school today, for the first time in a week and a half. (She had a decent night last night.) I took her bi-pap machine in, along with the pulse ox and tube feeding food pump. I figured she'd need to rest at some point during her day. She lasted from 8:45am-11:30am and then asked her nurse to lay down. Her nurse called me at about 11:45a and told me she was sound asleep, with SATs of 96%. Then she called back 30 minutes later and told me her SATs were 90-93%. So I went to her school, woke her up, put her in the van and headed home. It's 1:30p and she is back in bed, on bi-pap. I sure wish someone could tell me what is wrong here so we can FIX IT!!!! This just is not my Erinne!
Sunday, September 30, 2007
Erinne is better, despite not having an exact diagnosis as to what caused the hypoxia (low oxygen levels). Blood tests on Monday and again on Thursday suggest that she might have had a virus. We made a couple of adjustments on her bi-pap, giving her more breathing support, which seemed to have helped some. She did not need oxygen support Wednesday-Friday. Yesterday she felt well enough to go play in her first hockey game of the season. She did seem more tired to me, and was working hard last night on bi-pap to hold 94%. So I decided to add the oxygen again last night, to give her a little extra support. She is tired today ---- but maybe it is more mental tiredness, because we are trying to catch up on some homework (!) I'll be checking in with the pulmonologist tomorrow and see if they have any other suggestions.
Thursday, September 27, 2007
No Answers, More Questions
We still don't know what is going on with Erinne. She had more tests run at U of M today. Chest x-ray is clear, which means no pneumonia. She's not retaining CO-2 and Epstein-Barr Virus and Mono were ruled out, thankfully. She has a low-grade temp today, so maybe something is cooking. She seems to be slowly getting better (power of prayer!!) despite the medical folks not knowing what is going on yet. Today was her first day out of bed since Monday afternoon. She's asked to go outside and while that is not an option yet, at least it is a sign that she is feeling a little better.
The van broken down AGAIN on the way back from the hospital. SIGH!!!
Tuesday, September 25, 2007
Not A Good Night
Well, Erinne's night wasn't great. She was on 5 liters of oxygen throughout the night, which kept her SATs (oxygen levels) at 96%. That's a lot of oxygen when you don't know what is causing the problem to begin with. Her heartrate last night was better (lower), since she wasn't having to work so hard to get oxygen. I spoke with her pediatrician today and all the labs that came in today were normal. So our next trip is to U of M tomorrow to see a pulmonologist. Erinne has been napping on and off all afternoon, and she's back on oxygen. I wish I had better news. Thank you for your continued prayers.
Monday, September 24, 2007
Something is going on with Erinne and I can't seem to figure out what. She has been hypoxic -- meaning her oxygen levels are abnormally low while she is sleeping. (You and I are are probably at 99-100%. Erinne is having a hard time holding on to 90-91%, while on her bi-pap breathing machine.) And today we are now seeing these abnormally low oxygen levels at school. She is chronically exhausted -- no matter how much she sleeps, she can't stay awake and needs to sleep, and sleep and sleep, no matter what time of the day. I am guessing it is because her brain/body isn't getting enough oxygen. I took her to her doctors today and she checked Erinne from head to toe and nothing obvious showed up. But her oxygen levels were still low in the office. So they drew quite a bit of blood to check a lot of different things. She is now on oxygen at home, when sleeping. If it becomes necessary to need oxygen during the day, then it is off to Mott's Children's Hospital in Ann Arbor (University of Michigan) for more extensive care. I will speak to her pediatrician tomorrow to discuss some of the lab results. The rest of the results won't be back till Wednesday. Please keep her in your prayers.
Erinne has a slight injury on the bus last week (not the bus driver's fault). They were riding in a different bus than their usual one (and were strapped in in the way back, instead of up front behind the driver.) Latte is not wild abot the bus ride to begin with, and dealing with a different bus and having to sit in the back was very unnerving to her. Anyway, Latte's leash got wrapped around her foot and the foot was pulled up and to the side. She was in excruciating pain. I don't think it was broken, just badly sprained. It is still a little sore, but she is back to her normal activities, just a little more cautious with it.
Sunday, September 9, 2007
First Week of School a Success!
Erinne has had a GREAT first week of fifth grade! She has a wonderful teacher and her terrific nurses are back again to assist her in the classroom. Latte also seemed happy to be back "on the job." It is going to be an awesome school year -- I can tell already.
The van....well....we still are having problems with the computer module. The mechanic put a used one in so that the van was at least running while they sent it out to be rebuilt, again. At least Erinne can get out and about again, after being confined home for a month. This has taught me that it is time to start thinking about fundraising and getting a new van in the coming year.
My leg is still problematic. The stitches came out on Friday and I was given permission to do full weight bearing and to start aggressive range of motion exercises to break up the adhesions (scar tissue) that has formed under the 2 incisions over the past 9 months. I was not expecting it to be soooo incredibly painful. It hurts now more than it did after surgery. My surgeon is concerned about me carrying Erinne up and down the stairs (he is thinking the bone may not handle it very well) but I really have no choice but to carry her if Kevin is not home. When he is, he does it, but he isn't always home when she needs to be moved.
Wednesday, August 29, 2007
Suzanne - Post Op Update (home)
I'm back home.....not as bad this time as the last surgery in January. Of course that time was to repair the fibula and install hardware. This time it was just to remove the hardware. My throat was a lot more sore this time --- must've been a student intubating me. (ouch!) They started my surgery an hour earlier than scheduled -- one of the previous cases must've cancelled. I guess it only took 35 minutes to take everything out. Probably took longer to intubate and position me. They didn't do anything with the osteochrondritis dessicans on the tibia. He said he wanted to see if the pain would go away now that the hardware is out. "Don't want to muck around too much all at once." I think I will still need another surgery to repair the tibia because the pain there is very different than the pain on the fibula and my leg feels like it is going to give out whenever I pick up Erinne. But he said we need to wait 1 - 2 months and see how things develop. Boy, you sure don't appreciate being able to walk pain free on 2 legs until you can't. So anyway, I have a walker to add to my collection now. I wasn't very steady on it yesterday and resorted to the crutches again. (Must've been the anesthesia.) I am allowed to partially weight bear but no carrying Erinne at all. Doesn't help that my son has decided to cop an attitude this week. Thank goodness school starts Tuesday.
Still no van -- can you believe it? From being told it'll take about a week to repair to....this is the start of the 4th week. Argh! Anyway, thanks for all the concern and well wishes. I do appreciate it! And special thanks to Michelle for making yesterday's post (below) for me.
Tuesday, August 28, 2007
From Suzanne's Friend, Michelle Fox
Suzanne is out of surgery & back home! This is Michelle Fox - Malorie's mom. Suzanne just called me w/the update -- so I told her I'd post for her. She's home -- surgery was at 11:15am - she was home by 2pm. She sounds HORRIBLE - very rough & raspy voice from the intubation. She's back in a cast - and on crutches - for at least a week. They removed all of the hardware in her leg - but didn't mess w/the tibia. The dr was pleased with how her bones look - so that's wonderful news. Suzanne's going to try to get some rest. Liz will be at her house at 5pm - to stay the night & help out - which is such a blessing -- I can rest easy now! I told her I'd call her in the morning to check on her -- I think she'll be out of it the rest of today. She's such a strong woman -- I just don't know how she goes through all that she does -- oh, and by the way -- she STILL does not have her van back -- coming up on 3 weeks - not good! I'm sure she appreciates all of your prayers!
Monday, August 27, 2007
Under The Knife Again...
Well, my second surgery to TRY and repair my fractured left leg (from January) is scheduled for 11:15am tomorrow. I'd appreciate a spare prayer or two. I'll try and post an update later tomorrow evening if I am coherent...and if I'm not, I'll have someone else do it for me.
Friday, August 24, 2007
Bad Luck Continues.....
STILL NO VAN!!!!! They got the computer module back, put it in the van, and the check engine light was still on. So it had to be sent back AGAIN. We're now looking at next Wednesday or Thursday before Erinne is mobile again. OVER THREE WEEKS!!! I don't know if I'll be ready by then, because I am having surgery again on my left leg (the one I fractured last January) on Tuesday.
"If it weren't for bad luck, I'd have no luck at all....."
Tuesday, August 21, 2007
WHERE OH WHERE IS MY VAN?????
STILL NO VAN YET!!!! <Big Sigh!!> (Tomorrow it will be 2 whole weeks since it went down.) The parts have been slow in coming from Chicago. (I asked the mechanic today if it was being sent by pony express!) Maybe tomorrow.........
Sunday, August 19, 2007
HAPPY BIRTHDAY, CLAIRE!!
I want to wish Erinne's Big sister, Claire, a very happy 22nd birthday!! Claire was born is what once was West Germany. Seems like a life time ago...
Monday, August 13, 2007
I had professional pictures of Erinne & Kevin last week. You can peek at the proofs at PICTURES
Saturday, August 11, 2007
A Little Better Today....
Well, things are a little brighter around here.... First, one of Erinne's teachers last year, Barb Toth, picked me up on Friday and drove me around to get groceries and prescriptions. Mother Hubbard's Cupboard was bare, so that really helped! (We were rationing milk at home!) Then, one of Kevin's hockey buddies (Brandon's) Mom, Carolyn Wilson, and her husband Larry, brought me a car to use until the van is fixed! It is Brandon & his brother Tony's car, so I am grateful to all 4 of them for this kind gesture!! It is such a relief to know I have wheels here in case of an emergency. I have been blessed with such wonderful friends!!
Thursday, August 09, 2007
The Bad News Continues........
So I get a call from the mechanic this morning.....one of the computer modules is kaput. It'll take a WEEK to get everything in! And the piece de la resistance...$1200!!! Woo hoo!! He said he is stressing to his supplier and everyone down the line the situation with Erinne and will pay out of his own pocket any costs to expedite parts. A WEEK without transportation --- I still can't comprehend that.
I guess I'll go and cancel all of her appointments now........ugh!
Wednesday, August 08, 2007
An AWFUL Day :-(
I was heading to downtown Detroit today to Children's Hospital (about a 45 min drive) to meet up with Michelle & Malorie Fox (another SMA family who drove in from Grand Rapids -- almost 3 hours) and hook up with another SMA family -- Jenny & Ashley Bruner from Georgia. (They are in town for just 2 days for a drug study being conducted at Children's Hospital of Michigan.) My van has been sort of "acting funny" and I planned to get it checked whenever the gosh-darn child support check gets here (as you know, I'm not working right now.) Well, the dang van dies on me. Fortunately, we were at a gas station that actually had a mechanic on duty. So he is going to look at it and let me know how much $$$$ the damages will be. They think in needs a new fuel pump and there is a problem with the electrical system because the circuits kept tripping. No one around here has an accessible van so Erinne and I (and Latte) had to walk 1 1/2 miles home in FREAKING 93 degree heat (no idea what the heat index was -- I don't want to know!) OMG! My leg can't handle 4 blocks let alone 1.5 miles!!! I am very thankful that it didn't happen on the freeway or in downtown Detroit, but now I'm terrified of what they are going to tell me it costs to fix it. This is our only vehicle. I left the Bruners stranded because I was supposed to pick them up from the hospital and abandoned poor Michelle and Malorie -- a 3 hour drive just for dinner! Today reeeeally sucks!
Thursday, July 26, 2007
Bounced Back Again!!
Erinne is completely over this last little bug. Today she wanted to get dressed, get in her chair and get outside with her friends! She was out for hours and hours (other than to come in to use the ladies room or grab a snack or her hockey stick) --- and came in at 8:45pm only when her battery on her chair was dying! She sort of reminds me of when I was a child ... she'll stay outside for hours and hours (rather than play video games or sit in front of the TV) and come in only after she's caught a few fireflies or the street lights are on. She has so many friends in this apartment complex (it helps that they all go to school together.) This evening I had to run a quick errand and left Kevin here to hold the fort down. When I came back into the complex, the good old ice cream truck was stopped by where many of the kids (including Erinne) play and it just warmed my heart to see Erinne lined up with the rest of her friends, waiting her turn to get an ice cream (what used to be $.75 when I was little is now $2!! Geez!) Just so wonderful to see her doing what normal kids do, ya know?
Tuesday, July 24, 2007
A Summer "Bug"
Erinne woke up today with a bit of a "bug", telling me her chest was tight and that she needed a breathing treatment. (I'm thinking "Oh-oh...here we go again!") Three treatments later, she was able to bring some junk up from her lungs. This afternoon her temp is 101.5. I'm hoping this is a short-lived virus. I don't think a trip to the ER is necessary right now. She says her head hurts too much to sit up at all -- and when Erinne's doesn't feel well enough to play video games, I know she's sick!!
Wednesday, July 18, 2007
FUNNY LATTE STORY....
I thought you might get a kick out of this story..... Erinne was floating around the indoor pool in our complex today (she has a neck float that keeps her head out of water but allows her arms and legs move freely.) She was down in the deep end, watching her brother and a friend diving in. Latte is usually hooked to Erinne's chair while Erinne is swimming. One of the little girls we are friends with asked if she could "walk" Latte in the small fenced-in area adjacent to the pool. They walked around outside and then came inside. Latte right away started earnestly looking over all of the swimmers in the pool. She could not see Erinne. They walked all around the pool, starting at the shallow end ---- still no Erinne. When they finally got almost completely around the entire pool, Latte saw Erinne, who was resting one hand on the ladder and floating around. Latte then JUMPED in the pool to "save" Erinne!! The dad I was sitting with asked me if I thought Latte would jump in. All I managed to say was "I don't...." and in Latte went!! Kevin boosted Latte out of the pool and then Latte turned around as if to say, "Ok -- Erinne's turn to get out!" The depth of the relationship between Erinne and Latte never ceases to amaze me.
Saturday, June 23, 2007
ERINNE HAD A BLAST AT CAMP!!!
She did miss Latte, though. And Latte was almost inconsolable without her. After I parked the car and let Latte out, she ran to the cabins...and knew which one was Erinne's. I could hear a big squeal from inside...."LATTE!!" Erinne loved tree climbing, and, as always, hcckey was a big hit. But she decided that her rods in her back make it impossible to enjoy horseback riding anymore. She must've thanked me 10 times on the way home (before she passed out in the car!) for allowing her to go to camp, after her scary trip to the ER on the Thursday before camp. It is good to have her back home again. I missed her A LOT!
Tomorrow we celebrate her brother Kevin's 16th birthday!! I am determined to make it a special one for him. He is such a wonderful, special son, and such a blessing to Erinne & me.
Wednesday, June 20, 2007
Having a GREAT Time At Camp!
I've called up to camp a couple of times to check on Erinne and she is just fine! No symptoms, no problems ..... and having a blast! Latte is here with me and VERY, VERY mopey. We will pick Erinne up Friday at noon. I miss her!!!!
Saturday, June 16, 2007
Can't Keep This Girl Down!!
Erinne has completely bounced back from Thursday's scary episode. I took her to the pediatrician's office this morning to see if her lungs were totally clear and get permission for her to go to camp. She received a clean bill of health and the doc's blessing to head to MDA Camp tomorrow. (Lest you think I am totally crazy, there are docs, nurses and respiratory therapists in camp 24/7. All of her breathing treatments, medications and machines will be going to camp with her and all treatments will continue there.) She is VERY, VERY excited!! Camp is up in Lexington, Michigan, about 2 hours from here, in the Thumb of Mi. I'll probably go up there a couple of days this next week and stay with my friends, Chris and Cynthia Werstein, who rent a cottage just north of camp for the week. Their daughter Olivia is one of Erinne's best friends and is in camp with Erinne. They like to stay close by, in case of an emergency with either of our girls. There won't be any beach walking for me this year --- my (previously fractured) leg won't tolerate any walking whatsoever!
Thursday, June 14, 2007
Erinne "Crumped" Today.....
Just when I thought I've seen everything with this girl....... This AM Erinne woke up at 7am (1/2 hour earlier than I get her up for school) and said her chest was tight and she needed a breathing treatment. No big deal -- it has happened before. (She had a marvelous night, btw....on her bi-pap (machine that breathes for her), no drops in her oxygen levels, no complaints) I gave her Xopenex & Pulmicort and then coughed her. It did nothing --- she said she needed another breathing treatment. So I tried Pulmozyme. Nada. She said her chest hurt. I could not hear any breath sounds on the right at all. Then her oxygen levels started dropping into the 80%s....didn't come up after I coughed her and put her back on bi-pap. So I put her on oxygen, and got her to 92 % on 5 liters. Her heartrate was tachy (very fast) in the 140s. She started to deteriorate and told me she couldn't breathe.....and got that panic-stricken look in her eyes, which I haven't seen in 6 years. I am thinking "Holy sh___ ---she's going into respiratory distress!!!" All in a matter of 30 minutes. I called her doc who was concerned about a pneumothorax or pulmonary embolism, since this came on so suddenly and she had no other symptoms (including no temp.) She wanted me to call EMS and get her out to Mott's Children's Hospital in Ann Arbor 40 min away. I told her they probably wouldn't take her there, because it was not the closest hospital. (They wouldn't take me to my hospital of choice when I broke my leg in January and that hospital was closer then this one.) I called my friend Susan who is also one of Erinne's nurses at school for a quick prayer and she offered to go with me. I dragged Kevin out of a sound sleep (you know how teenagers are) and he helped me get all of her equipment and her loaded and just as we finished, Susan arrived and off we went. Erinne ended up vomiting on the way there and still was tachy at 140 and SATs were 92-93% on 5 liters of oxygen with bi-pap. When we got to the hospital, she was the only kid in the Ped ER which was great. By that time, she was EXTREMELY junky and gurgly and still vomiting and could no longer talk because she was so short of breath. Vitals were unchanged. Chest x-ray showed no pneumonia. Then she started running a temp of 102. This was like bam-bam-bam. They did 3 neb treatments in a row of Atrovent and Xopenex. CBC (blood test) showed an elevated white count. She got 2 bags of IV fluids, IV steroids, IV Zofran, and Tylenol for the temp. She FINALLY turned the corner and vital signs slowly started to come around. They were calling it an asthmatic reaction to a viral infection They offered me the opportunity to stay for a day or two to see how she did, but she was back at the point where I felt comfortable taking her back home. So 5 hours later, we were on our way home, with scripts of Atrovent, steroids and Zofran.
She isn't back to baseline this evening, but she's very close 94% with no 02 (oxygen) right now & a HR (heart rate) of 95 sleeping. (She's normally a 60s gal so we are still a bit elevated there.) I've never seen her go bad so quickly -- less than 30 minutes. And then 5 hours later, be well enough to return home.
I think I picked up a dozen more gray hairs today. I might have to get my roots touched up sooner than expected! I think I'll go find a glass of wine now........
Erinne is better. She went to school yesterday for 1/2 day and today a full day. Today is Field Day and she will be outside for as long as she can tolerate the heat. It is supposed to be 89* today. Fortunately, Erinne has a nice (air conditioned) room she can lay down in if she gets too tired or overheated. On Monday, we will be celebrating Erinne's birthday with her friends and classmates with a bowling party. She is very excited!! Did you have an opportunity to listen to the song on Erinne's home page? What do you think?
Tuesday, May 22, 2007
Erinne's Down For The Count
Erinne has not bounced back from her surgery as I had expected. She has had clear/white secretions since she was extubated, but were manageable with the CoughAssist. Stamina is still quite down, but I keep telling myself she just came through major surgery. I started her back on her one of her 'experimental' or study medications that she has shown significant strength gains with, hoping that would help accelerate things. We went to see a play on Saturday night and on the 8 mile drive home I had to pull over & stop 4 times to pick up her head. It has been years since I've had to do that! She's been very lethargic the past several days, sleeping a lot. Again, I keep telling myself she just had major surgery. Tonight, she has spiked a temp of 101.2 and is complaining of being cold (which makes sense.) Sleeping heart rate 20-40 points higher than it usually is. Some of her symptoms just seem to be allergy-like (clear runny nose.) Chest is clear. I changed the dressing on her incision last night and it looked clean and intact. I called the doc-on-call at 9:40pm and asked for an antibiotic. (We don't normally see this particular doc.) He didn't want to call in a script -- he wanted me to go to the ER. NO THANKS, doc. He finally gave it to me when it became abundantly clear I was NOT going to take her to the ER tonight. Wish I could pinpoint what the heck this is! SIGH!!
Sunday, May 20, 2007
Birthday/Post Op Weekend
Erinne's post-op/birthday weekend went well. She still fatigues easily, and isn't quite up to her normal eating/tube feeding levels yet. On Saturday evening, we went to see a play that Erinne's buddy Becca (my friend Susan's daughter) was in. It was the only thing Erinne did on Saturday. On the way back home, I had to stop 4 times to pick her head up on the 8 mile trip. The strength just hasn't quite returned yet. She is thoroughly enjoying her new friend, Ozzie. They fall asleep together, snuggling, with Ozzie tucked alongside her neck. We are learning what each of Ozzie's noises mean. He's a cutie!! I hope to hold Erinne's friend Birthday party next Monday, Memorial Day. She wants to have a bowling party this year.
Wednesday, May 16, 2007
HAPPY BIRTHDAY TO MY BIG 10 YEAR OLD !!!!
Erinne had a good, albeit low-key, birthday. We went up to school with birthday treats a half hour before school got out so she could visit with her friends. She was mobbed -- and loved it! Next we went to pick out her birthday present (although she didn't know that's what we were doing.) She's been wanting a bird ever since our cockatiel died 3 years ago. While the last thing we need is another pet (2 dogs, 2 cats and a rabbit), it is something she can hold and train all by herself. It is a 7 week old green-cheeked Conure that she has named "Ozzie" after her favorite hockey player. She (he?) is so sweet! Ozzie and Latte were nose-to-beak without any problems. Erinne wasn't up to going out to eat/celebrate, so I hope to be able to do that this weekend sometime.
Tuesday, May 15, 2007
Erinne is doing TERRIFIC! She slept GREAT last night and felt good all day. She's had pain meds a couple of times today, but the pain wasn't enough to send her to bed. She's still coughing up 'stuff'. She went for a ride to pick up her brother after school and that was her outing for the day. She finally got a shower this evening and I changed her dressing on her back (OUCH! That tape was sticky and ripped the little downy hairs off her lower back!) Hard to believe tomorrow is her 10th Birthday!! We're going up to school tomorrow afternoon to share birthday treats with her classmates (whom she misses a lot!)
Monday, May 14, 2007
SHE'S HOME FROM THE HOSPITAL!!
Erinne was discharged from the hospital this afternoon. It was like saying goodbye to friends when we left -- see you in 10 or so months! There are so many people there that took care of her during our extremely difficult hospitalization in 2001 of 101 days, that also took care of her these past couple of days. They were/are so wonderful with her ----- it was like aunts and uncles looking after their niece. From Dr Jeff, to Dr Anne Marie to Dr Groves to Dr Sarniak to Nurses Robyn, Amy, Pam, Amanda, Annette, Helen, Dana (I know I am forgetting some names here....so sorry!), to the wonderful RTs Amanda, Larry, Matt, and especially RT Chris, who took time out of each day to take Latte outside and allow her to be "just" a dog for a little while, chasing a ball, rolling in the grass, getting her belly scratched and feeding her her favorite snacks - carrot sticks! (THANK YOU, Chris! You are terrific!) I feel like I am among family when we are there, and that they truly care about Erinne as an individual. The drive home was uneventful and she did great on the trip. She's only had a little back pain. We were going to try a shower tonight but she is too tired to sit in the shower chair. Her surgeon, Dr. Mendelow, called this evening to check on her. We'll see him next week for a follow up.
Right before we got home, we stopped by where several of her friends play and they swarmed the van! They were a bit tentative at first, seemingly worried that she was a bit 'fragile', but they soon realized that she was still the same old Erinne! They wanted to know when she would be coming back to school and when she would be joining them outside to play. (Not sure on that yet.)
I am sooooo exhausted and sore from trying to sleep on a slightly padded window bench in the waiting room. I'd like to get Miss Rosie to bed soon so I can pass out in a real bed! 1 1/2 more days till her birthday! Thanks for checking in.....
Sunday, May 13, 2007, 9:00pm update
SUNDAY EVENING UPDATE
Erinne is doing well and we will go home tomorrow. She had a good night and I was actually able to stay in the ICU lounge from midnight till 8am without being called back once. She continues to tolerate the Vivonex well (she's up to 55mls/hr) and has had 1 bite of pizza. No more stomach problems. Back pain is about the same. Her dressing was changed this afternoon (causing her A LOT of PAIN!) and the incision was a little longer than I expected -- about 7 inches. (I thought it would be about 3-4 inches. The first incision was 18 inches long.) She'll be getting up in her chair this evening. Still on and off the bi-pap and is coughing up brownish/bloody chunks (sorry if you are eating while reading this!) I can't wait to see my own bed and take a shower!! Thanks for your love, prayers & concern.
Saturday, May 12, 2007, 10:40pm update
SATURDAY EVENING UPDATE
Erinne was extubated (taken off the vent) this afternoon to bi-pap without any problems. She asked to come off pap 30 minutes later, and then back on pap 30 minutes after that. She has been on and off pap the rest of the evening, but mostly on. She has used the CoughAssist a couple of times and had no problem bringing up secretions. The foley was pulled a couple of hours after she was extubated. She had to go back to the morphine to manage her back pain, but it isn't surpressing her respirations (but she also has a back up breathing rate of 12 on pap.) After trying IV Zofran, IV Reglan and IV Zantac, and then extubating her, the stomach pain stopped. Erinne said it was caused by the endo tube -- it was gagging her. But that's when the back pain came back with a vengence. I started her feeds back up this evening -- just Vivonex, apple juice and water for now. We're up to a whopping rate of 15 mls/hr! I won't let them give her any oral meds so I can see if she can tolerate the feeds w/o gastric upset. I need to know if the oral meds are what is upsetting her stomach. IF she can tolerate the feeds all night at a more reasonable rate and we can swith her pain meds back to Loratab (one of 2 we use at home for pain) we should be able to go home tomorrow. Erinne said she doesn't think tomorrow is a good day and she should stay till Monday. I told her she can talk to the surgeon about it tomorrow. She has another excellent nurse tonight who has taken care of her before so I am looking forward to some much needed sleep on the couch in the waiting room. I haven't been able to leave the hospital and sleep at the Ronald McDonald House because there isn't anyone here to stay with her for me to do that. Anyway.......better news than this morning!
Saturday, May 12, 2007 - 9:05am update
SATURDAY AM UPDATE
It's been a bit of a rough morning after a relatively quiet night. Erinne slept from 2:00am-5:00am so I did too. Erinne still has a lot of secretions that have to be suctioned out so the breathing tube will remain in for a while. She is having a lot of stomach pain and they have had to stop the Toradol and go back to morphine and add an anti-nausea medicine, Zofran. Right now, her stomach hurts more than her back does. She's not making eye contact with anyone -- it hurts that much. I'll update again in a couple of hours.
Friday, May 11, 2007, 11:55pm
Late Friday Night Update
Erinne is off the O2, breathing above the vent and keeping her SATs up fine. She is off Morphine and on Toradol. The only thing we are waiting for is for the secretions to cease (and the need to cough and suction through the breathing tube every 30-60 minutes.) It was some nasty looking stuff earlier today, but now it is mostly clear. However, she still does not have bowel sounds, is not digesting the Reglan & Zantac and has been complaining of stomach pain for the past 4 hours. We put her G tube to drain and got a bunch of junk out. She has dry heaved and brought up stuff as well. Still not on feeds yet, but I haven't reached the point of worry on that. We're switching over to IV Reglan. The ICU staff & docs have been great about the extubation protocol. They said it is up to me to decide when she is ready to extubate, because "you know her best." I told them I would need to see a significant decrease in secretions before we would take that step. I am so pleased that they are being so accommodating. I hope to get a nap in a little bit --- 3 hours of sleep total over 2 days just doesn't cut it!!
Friday, May 11, 2007, 1:30pm
SURGERY IS OVER!
Surgery went well! They started at 9am (it takes a while to get intubated, IVs & catheter put in and positioned on her stomach) and were finished at 10:30. She grew 17 cm! She is in the ICU, still intubated (on the vent). The ICU docs are on the same page with me and are willing to wait until tomorrow to extubate her. They have started dialing down her oxygen (a good thing), but she is not assisting the vent yet. She has been awake and complaining of pain, but they are keeping her very comfortable with strong pain meds (she is asleep now.) They are also willing to start her tube feeds tonight, rather than fasting her (another request of mine.) We'll stop them for 6 hours tomorrow to take the breathing tube out. Latte was so depressed...she kept pulling me over to Erinne's empty wheelchair in the waiting room, as if she was saying, "Don't you see the problem here????" I came into the ICU before Erinne did and a film crew happened to be here. We talked about Latte & Erinne's close relationship and how depressed Latte was waiting to get her Erinne back. They asked if they could film the "reunion". (Of course I said yes!) Latte knew it was Erinne coming down the hall on the stretcher before you could even see who it was. I had to hold her back while they got the bed in the room and then Latte pushed her way through the crowd in the room, put her front paws on the edge of Erinne's bed and "walked" herself up along the edge (sniffing her body as she went up) of the bed to Erinne's head. (There was a collective "Awwwww!" in the room, caught on tape.) Once she realized Erinne was okay, she laid down next to the bed, curled up on the floor and went to sleep.
I am very relieved it is over! It is just Latte and I here, as my friend was not able to join me this morning. I am sooo tired!
Wednesday, May 02, 2007
Just a short update.....no news is always good news! 9 days till surgery..... Erinne is playing in her (possibly last) playoff hockey game this Saturday at 6pm at Ward Church. So if you haven't seen her play yet this year and planned to, this may be your last opportunity. She'll be playing soccer this week and next and then not sure when she'll return to soccer after surgery. She'll be starting baseball in a couple of weeks -- as soon as she is able. Erinne got her first straight "A" report card this card marking! She didn't start getting actual grades till this year. (Last year was a mix of +/- and some letter grades.) I am so proud of her!! She had 1 "B" last marking period and was not happy with that. She also got some new motors on her wheelchair, as the last ones had a problem with them. Now her chair can go up to 12 mph!!! How cool is that?? Thanks for stopping by.
Saturday, April 14, 2007
Not Feeling The Best Today!
Erinne is not feeling the best this morning and unfortunately will not make her hockey game this afternoon. She has been resting on the couch since she got up. (I don't think it's anything major.) Her playoffs start next week and she wants to get in those last 2 games before her surgery on the 11th.
Tuesday, April 10, 2007
Erinne's surgery has been rescheduled for FRIDAY, MAY 11TH. She is a little worried that she will still be in the hospital on May 16th, her 10th birthday. I told her we'll hope and pray that she'll be out on the 15th, but if she's still in, we'll just have one heck of a birthday party in the hospital!! Now I just have to keep her healthy for the next month. Continued prayers appreciated!
Friday, April 06, 2007
NOPE -- IT'S CANCELLED!!
Erinne's surgery has been cancelled due to the lack of available beds in the ICU. Erinne is extremely disappointed.....(understatement!) She has been worried all week about the pain.....and now she'll have a few more weeks to worry some more. Due to the surgeon's schedule and the humanitarian surgeries he is already scheduled to do in Guyana at the end of the month, we may not be able to schedule this again until May. What a bummer.
Friday, March 23, 2007
SURGERY IS A GO!!
Erinne's chest x-ray and labs checked out just fine so providing nothing comes up in the next 2 weeks, surgery is a GO for April 6th, Good Friday, at Children's Hospital of Michigan. She will probably be in the ICU for the majority of her stay. Visitors are welcome, providing you are well and symptom-free. Latte of course will be with us in the ICU as well.
Tuesday, March 20, 2007
A Test of Faith
As you may know, I am sort of a contract employee for Ford Motor Co., running one of their family center programs. I have been there since before the building even opened -- going on my 5th year next month. We have a very successful program with high participation numbers. But with Ford's dire financial crisis, I knew that our programs were in jeopardy. The rumor was, we would be closing permanently the end of June. On March 12th it was announced that we would be closing in 30 days -- on Friday, April 13th. What a shocker. I am still off work, trying to recuperate from my broken leg and now I will very soon be out of a job and without medical insurance. It is kind of hard to interview on crutches -- doesn't leave a very good impression, you know? Sigh. Such a test of faith.
Monday, March 19, 2007
Visiting With The Red Wings!
As you saw by the pictures on the front page, Erinne had another opportunity to meet with her beloved Detroit Red Wings again on March 10, 2007. Her eyes just dance when she has an opportunity to talk to them! Mathieu Schneider gave her his brand new Synergy stick that he has just used at that practice. She also got to see her hero, goalie Chris Osgood "Ozzie." Goalie Dominik Hasek was quite friendly with Latte. I am hoping that a couple of them will surprise her and come and see her after her surgery next month.
Friday, March 16, 2007
Back On Line!
We're baaaaack! Been off line for a week, due to the d*mn cat chewing on the charger cord. (Yes, he's still alive!) Couldn't find the right replacement after hobbling through 5 stores... my dear friend Laura from SMA Support came to the rescue and found me the right one! I'll update with more news soon. Erinne has been fighting a strange bug for 4 days an has missed 3 days of school....high fever, high heart rate, low oxygen levels, fast breathing, and no other symptoms! I'm thankful that there are no other symptoms, but on the other hand, either be gone, or manifest into something we can treat!!! Surgery in 3 weeks --- gotta be well and on no antibiotics!
Sunday, March 04, 2007
Prayers for Erinne
Just wanted to ask you to please keep Erinne in your prayers as she is going through some difficult emotional times right now....she has had 3 key people whom she loves very much walk out of her life and she has no contact with them anymore .... it's been hard on her. I don't have an answer for her when she asks, "If _____ loves me, why won't s/he see me?" She has enough to worry about with her upcoming surgery and she doesn't need anything else on her plate. Thanks.....
Wednesday, February 21, 2007
Orthopedics and Orthodontics
Erinne's orthodontic appointment on Monday 2/19 was better than the ones over the previous 2 years. At least they are willing to try a palate expander and external reverse headgear to try and pull her upper jaw out. He said she will still probably need reconstructive surgery after puberty, but he gave me a little hope when he said the surgery may not be as severe if we can make some improvements over the next 4 years. He did say that we may not have great success with either, but we may have a little luck and a little is better than none. So at least someone is willing to TRY something!! He is also talking to one of the other docs who has a few similar cases to see what she is doing. He said he would call me in a week or two after he speaks with the other doc.
Erinne's orthopedic surgeon's appointment was today. X-rays revealed that her spine has starting its curve again (which I could already see by looking at her back.) She has a 9 degree change since last summer. Consequently, he believes she cannot wait until the end of June to have her rods lengthened. I asked him if he could wait until Easter break and he thought she *probably* could. But he asked if I was at all flexible if he wanted to do it earlier . I lifted my cast up in the air and said, "Well, it's not like I'm going anywhere!!" He can only do surgeries at Children's Hospital on Fridays so we are planning on April 6th, which is Good Friday. I hope & pray it will be a Good Friday. He said the procedure should probably be done in 2.5 hours (as opposed to the 7 hours it was when they put the rods and all of the hardware in.) She'll go directly to the ICU like before and the length of her stay will be determined by her post op pulmonary recovery. Hopefully just 4 or 5 days. I'm disappointed that we can't wait until the end of June, but I guess that's life.
Wednesday, February 14, 2007
Snow Day !!
We are home enjoying a snow day today. Latte is from Georgia and is loving the snow.....until she had to squat in it last night and realized the snow was too deep for her liking! IT WAS HILARIOUS! I could almost read her thoughts ---- "Woo! That's a little too cold down there!" Erinne slept in till 11am (I loved it!) She is doing well. She is off of school next week for winter break. She has a couple of doctor appts. She is going to the University of Michigan dental school for an orthodontic assessment on Monday. She can't be treated by just a regular orthodontist because of her "midface hypoplasia" -- the bones in the center of her face are pushed in because of her bi-pap machine that breathes for her at night. It has retarded the growth of her upper jaw and caused her lower jaw to grow at a faster rate. No orthodontist would put braces on her. When she was first assessed 2 years ago, I was told she would need major reconstructive plastic surgery to fix it, after she finished puberty. I sought out opinions at Children's and U of M from plastic reconstructive surgeons and was told the same thing. (We're talking splitting her scalp and peeling her face down to repair and rewire her facial bones. THAT was tough news to take.) In the past 2 years, the hypoplasia has improved some, so I am hoping we can start doing something with her jaw/teeth. The other appt is with her orthopedic surgeon, to finalize her next scoliosis surgery, which is scheduled for June 29th. She has to have her rods lengthened. A growth spurt will do that! Her first surgery last summer was 7 hours. She was in the ICU for 5 days, ortho rehab for 4 and then home. 9 Days -- a record of sorts for her! This time, because all the hardware is already affixed and "just" the rods have to be switched out, it *should* be just a 3 hour surgery. I am hoping and praying for 3 days in the ICU, 2 in rehab and then home. I was supposed to have a cast change this week, but the surgeon's office moved it to the 28th.
Friday, January 26, 2007
New Purple Cast
Went to see the ortho surgeon again today for x-rays an a cast change.....I saw that I have 1 plate and 7 screws in my left leg/ankle. I also have to go for a bone density scan. The surgeon said my bones weren't as dense as they should be for someone as young as me (gee -- that's the first time I've heard that!) Still on crutches till my next appointment in 3 weeks. Sigh! I hate these crutches! I have managed to fall 4 times trying to use them, the most recent was today, trying to come in the house after getting the new cast. I managed to keep my broken leg up in the air while I fell flat on my face!
Monday, January 22, 2007
Erinne is much better and has returned back to school albeit with her cough machine in tow. She has to take the bus to school in the morning now since I cannot drive her --- makes for some long days for her at school. Thank goodness she has a room to rest in at school! My surgery went as well as could be expected. A plate and some screws were put in to hold the bones together. I am on bed rest until I see the surgeon on Friday 1/26.
Wednesday, January 17, 2007
The FUN Continues!!!!
Now my little sweetie is sick. Yesterday she started with a runny nose, productive cough and headache. Last night her heartrate was very high (pulse ox alarmed all night) and she spiked a temp of 101. She's bringing up stuff with the CoughAssist. I called her doc's office as soon as they opened and they are not making me bring her in -- they called in a script for Augmentin. Hopefully I can get her feeling better before I leave for surgery tomorrow. Life is soooooo exciting around here!
Tuesday, January 16, 2007
HA HA HA!
The Good Lord has quite a sense of humor, I can assure you. On Monday, we had an ice storm. Didn't affect us, other than my son, Kevin didn't have school (Erinne already had the day off -- MLK day, woo hoo). But, the ortho doc's office didn't have power -- all day. I called there in the AM and then again in the PM, begging the answering service to get someone to call me. Finally the office manager called me back, and I told her of my predicament --- a bone that was not yet set and a LOT of pain! She said she couldn't promise that she could even get me in to the office today because they were going to be so backed up. But she did offer to call the hospital (not where I went on Saturday -- my primary hospital) and have the ortho resident meet me in ER and then she would also call the attending doc and tell him I was coming in so he could expect a call from the resident. So, one of Erinne's school nurses, Susan, (who is an absolute angel) insisted on driving me to the hospital. I told the resident that I had fallen on my left leg during the night, coming back from the bathroom. Susan also told the ortho resident that I was a non compliant patient (well, I did take off my 1/2 cast Sunday night -- it was hurting!), and informed him of Erinne's situation so that he would keep that in mind when they decided the best course of treatment (and how heavy of a cast to give me, I am sure!) He re-x-rayed it and said the bones were 'almost' in the same position they were on Saturday (I had those films with me) and put a big, heavy cast on. My foot was quite swollen and not at a 90 degree angle anymore so the first thing he did was stretch out my Achilles tendon --- PAIN! Then, as he was casting my foot (I am on my stomach with my leg bent & foot in the air -- probably to render me helpless and prevent me from kicking him!), he was really stretching my foot into what was most assuredly NOT a a 90 degree angle! Sue said he was resting his forearm on my foot and using his elbow to torque my foot into a better angle. But then he grabbed the cast he had just applied and squeezed the cast with both hands tightly around my leg were the break was ---- OMG the pain was incredible! When I shreeked, he said, "Oh, I didn't think you'd like that part." Geez -- could you have given me something first?? Then he told me that the attending would review the films and to be prepared for the 'possibility' that the attending may decide to repair it surgically. He told me I would have to stay off of it for a month. YOU'VE GOT TO BE KIDDING ME! Well, the possibility became reality this morning. The resident called me to tell me that the attending reviewed the films and he is concerned that it will not heal well without a plate and some screws. So, I 'get' to have surgery on Thursday! yee-ha. I am so thrilled beyond belief. I asked him if he would be assisting the attending and he said no. I told him, "Darn! Now I can't get back at you for what you did to me yesterday!" So, that's life in the fast lane in Michigan! And the pity party continues...
Saturday, January 13, 2007
PITY PARTY TIME, AND YOU'RE INVITED
LIFE JUST SUCKS sometimes...ya know??? I mean, REALLY sucks big time. Today, Erinne and I were home alone and at 1pm, trying to get out the door to her hockey game, and I opened the door, didn't realize there was an icy patch directly in front of the door....and fell. I broke my left leg. I managed to crawl back in the house and into a chair with casters and got my leg elevated. I called Kevin, who had stayed the night with a friend and told him he had to get home QUICK. I couldn't call 911 until he was here....otherwise, what else would I do with Erinne? He got home about 30 minutes later and then I called 911. Called Liz too, who was supposed to go to Erinne's game. She detoured over here, and called her Mom and told her to get here too. They all arrived about the same time as the FD & EMS. The ride to the hospital was a ride from hell. Every bump, every time the driver hit the gas ---OW! Pain was 9 out of 10. Anyway, I broke the fibula, just before the head of the bone which connects to the ankle bones. I'm in a cast & on crutches and have to see the ortho surgeons on Monday. It doesn't appear to be a displaced fracture, so hopefully I won't need it surgically pinned. Of course I can't put any weight on it....can't pick up Erinne....can't do CRAP. Not even sure I can drive myself to the doc's appt on Monday, let alone care for Erinne on 1 leg. I called Erinne's dad at 4:30pm to see if he could come over to help, but he was drunk --- so much for that idea. Kevin has been very kind & considerate which I truly appreciate. Just wanted to share the news....now I am going back to have my pity party. This is just so damn frustrating!
Tuesday, January 02, 2007
I want to share a poem with you today. This is our lives, to a "T". REALLY hits home for me -- and accurately describes why I am chronically exhausted:
Where Are the Parents?
By Sue Stuyvesant
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families. They are busy, trying to survive.
* * * * *
I'm missing my Mom today. She earned her wings 14 years ago, this evening -- 7:37pm. She valiantly fought a rare cancer for 5+ years. She was at home in coma, and I finally had the courage to whisper in her ear that it was okay to go now. She 'came to' a bit (she had been unresponsive for over a week), said to me, "Yeah" --- and died. It was so hard for me to tell her it would be okay to go -- but I knew I had to let her. She was suffering so. God - do I miss her!
Thursday, December 28, 2006
MERRY CHRISTMAS!!! Erinne had a wonderful one. Her favorite gift was an air hockey table. (Of course Kevin is enjoying that one too.) She also got an MP3 player from her wonderful nurses, Melanie and Susan. Kevin got a new TV to play his video games on (a 13 inch just doesn't cut it when 4 teenage boys are crowding around it, trying to play a game!) Of course Erinne benefits from this present too! They also got a Star Wars chess set which is pretty cool looking! The funny thing is, Darth Vader is the queen! As has been the case in Christmases past, we have been at a hockey rink, watching Kevin play in a Christmas tournament (so far, not so good!) Erinne's been visiting with friends that she doesn't see every day, like Olivia and Alec, and she has enjoyed that. We're hoping to catch up with Matthew soon too. This break is rushing by much too fast!! Happy New Year!
Monday, December 04, 2006
Erinne the Scholar
Just a quick update ---- no news is good news! Erinne had an outstanding first quarter marking, despite attending school part-time. I really enjoyed my parent/teacher conference. Latte got a good report too! :-)
I received some wonderful news in the mail a couple of weeks ago. Erinne's teachers nominated Erinne to participate in the National Young Scholars Program, taking place in Chicago next July. The nomination read, "Erinne was nominated by her teacher who recognized her as a special student who demonstrates exceptional maturity, scholastic merit and leadership ability even at her young age...Age has never been a barrier to leadership...it is often easy to identify early on those who have the potential to serve as future leaders. Recognizing these special students and focusing their natural abilities is the goal of NYSP. We are convinced that in an atmosphere designed to stimulate the creativity, wonder and curosity that is the gift of childhood, we can also challenge and motivate these young scholars to begin purposefully developing their natural ability to lead, to achieve and to excel. A high level of maturity is our first consideration in accepting students for the National Young Scholars Program. We have been told Erinne has the maturity we seek, as well as the strength of character and leadership ability that will enable her to get the most out of this unparalleled opportunity. By attending the NYSP, Erinne will take an important step toward being recognized as a young leader in her school and community and gain the kind of experience and perspective that will benefit her throughout her education and beyond." I am so very proud of Erinne!
Of course with this opportunity comes a price tag of about $2,000. But her teachers and I are brainstorming some fundraising ideas to help us meet this goal. I welcome any suggestions or ideas that you may have.
Saturday, November 18, 2006
Back to Hockey!!!
Erinne's back to her old self! She had a great hockey game today and was named one of the 3 stars of the game! Pretty good for the youngest player in the entire league. This was the second time she was recognized as a star of them game. They won, 5-2. She had a headache and a low grade temp before the game but did not want to miss another game, so a little ibuprofen before the game and she was fine. After the game, the announcer said that Erinne was going to be auctioned off for a centerpiece for thanksgiving (because of her chair decorations!) She laughed when she heard that! Her math teacher and her husband came again to watch her play (Thank you Mrs. Toth!) Erinne LOVES it when she has her own cheering section!
Monday, November 13, 2006
Back to Normal Already!
Well this pneumonia didn't keep her down for long! This was caught so early, before it had a chance to take hold. She'll be back at school tomorrow because she is asymptomatic and acts as if nothing is wrong whatsoever. Only 4 days down --- must be some sort of record!! Such a tough kid!!
Saturday, November 11, 2006, 3:00am
ERINNE IS SICK!!
ERINNE HAS PNEUMONIA!!!! We caught it early, but she will be homebound for a little while. She's not happy that it is affecting one of her beloved hockey games. Hopefully the people from her school that were planning to attend will see this and not show up to her game today!! This makes pneumonia #16. Luckily, her nurse with her at school on Thursday noticed that she was 'off' --- oxygen levels were dropping and heartrate was increasing --- and gave me a call. (THANK YOU SO MUCH, MELANIE!!) I took her to the doc's on Friday who then confirmed that the right upper and middle lobes were affected. Hopefully, we've caught it early enough that it won't slow her down at all. More news later......
Sunday, October 15, 2006
BRIGHT RED Q 6000
Erinne received her new wheelchair a couple of weeks ago and it has been such a blessing! For the first time since her surgery on July 10th, she is NO LONGER in pain while sitting!!!! This chair allows her many seating options/adjustments that she can do right from her joystick. Latte is having to work a little harder at keeping up with this new (faster) chair! Pictures soon!
Thursday, September 28, 2006
So You Think You Can Dance??!!
OH MY GOSH!!!! WHAT A GREAT NIGHT WE HAD!!!!!!!
It has been years since I have had that much fun! I could not secure backstage passes before we left for the show, so we went down early, and hoped for the best. Yep! It worked! One look at those baby blues (Erinne's) and the baby browns (Latte's) and we were given backstage passes! The show was fantastic -- 2.5 hours worth! We were about 15 rows from the front and on a riser, so Erinne could see perfectly. She has never been to any kind of performance like this (except for the ones you see at Disney World) so this was a whole new experience for her - and Latte. Lots of crowds, and LOUD -- both things that can be tough for them. But they did GREAT!
BUT AFTERWARDS......WOW!!!!! Erinne was a little nervous. She was sort of in the back of the room, off to the side when the stars/dancers came in. (There was about 15 other people in the room, waiting to meet them.) But as soon as they saw Erinne and Latte, patiently waiting for them to notice her -- and notice her they did! Each of them came over to her, sat down or bent down to her eye level to talk to her. Of course they also loved on Latte a bit ( a lot) too. BENJI (the winner of the TV show) came over and hugged her, as did TRAVIS (runner up). Both guys were so wonderful with her! JESSICA sat down and never moved from Erinne's side. All of the dancers --- NATALIE, ALLISON, IVAN, RYAN, DEMITRY, DONYELLE, HEIDI AND JAYMZ (everyone except Martha) spent time with her. But Benji stole her heart. He asked me a few questions about her and then asked if she needed anything. I told him, no, she didn't need anything -- maybe just a penpal. He said he would definitely do that! She gave him her website address and he asked for our home address so he could send her something. And he reiterated that I should contact him if I ever needed anything for her. He gave her a hug and a KISS good-bye! She was on CLOUD 999 after that. She still is talking about it!!!!
Tuesday, September 26, 2006
It Has Taken Me Long Enough!!!!
BOY!! This has taken me WAAAAY TOO long to write this update! Actually, I had it written a couple of days ago --- and it disappeared before I could post it here/save it. Bummer! Back pain wise, Erinne is doing well. She doesn't have any back pain unless she is picked up wrong. Her hips are another story all together. She has trouble sitting for any length of time during the day and has to get out of her chair and lay down a couple of times a day at school. Fortunately, the wonderful principal at her school has provided Erinne with her own room to lay down in, and it is just down the hall from her primary classroom. I took in a mattress and they put it up on a table to save on the nurses' backs. The custodian took down all of his Red Wing pictures in his office and put them up in Erinne's room, including on the ceiling, so she could see them while laying down!! How cool is that?? She still manages to keep up with the class and dictates her work to her nurse while resting. I WISH she was able to stay in the classroom because the time out of the room is impeding her ability to make friends and socialize. She is still having trouble making it through a whole school day (stamina wise). Today she was there for the full day and had to lay down twice -- she could not keep her head up or eyes open.
On the plus side, she started playing wheelchair hockey again and was drafted by the Seals! The league has about 50-55 players on 5 teams (8 to a team plus subs) and Erinne is the youngest out of all the players. The oldest player is in his 60s. Her friends Olivia and Rebecca also joined this year, and unfortunately, they could not all be on the same team (too many rookies!) Erinne played her first game of the season and was awarded the second star of the game. She was on CLOUD 9!! Her next game is Sept 30th, Saturday at 3pm at Ward Presbyterian Church, 6 Mile and Haggerty, behind the bookstore/strip mall. C'mon out and watch some VERY competitive hockey if you are in the area! (They play inside in the gym.) I will post her schedule soon. E-mail me (Erinnesmom@gmail.com) or call me (734-560-1242) if you need better directions.
On Tuesday 9/29 we are going to see "So You Think You Can Dance" (#1 show this past summer) and hope to meet the winner, Benji, backstage. Keep your fingers crossed!! On Wednesday, Erinne FINALLY, FINALLY gets her new wheelchair! It has *only* taken 7 months (NOT good!) We'll let you know how that goes!
I am hoping that Erinne will be able to shake this cold/bug/allergies that are driving her crazy -- we're going on day #12 here. THANK GOODNESS for the cough machine on a luggage cart!
Erinne had an OUTSTANDING first week of school! The principal and faculty at Fiegel Elememtary have gone out of their way to welcome her and Latte (who is attending full time.)Over the summer they completely remodeled a bathroom JUST FOR HER which was a surprise. Her nurse from last year, Melanie, transferred school districts with Erinne (so she has one familiar face) and she has another great nurse, Susan. The students are very curious about Erinne and Latte and are asking a lot of questions and staring which makes Erinne a bit uncomfortable. The principal will be addressing that with the students. I did send a note home in the school news letter, introducing Erinne & Latte, but I am not sure how many folks read it. Erinne & Latte take the bus ride home in the afternoon. Latte does not like it one bit. Erinne's first bus ride was a little too bumpy and she was crying because of back pain, saying the substitute driver took the speed bumps too fast and caused tremendous pain in her back. But now with the regular driver and cinching down her seatbelts really tight, she doesn't bounce as much. Many of the teachers from the school have signed her guestbook already which is a very pleasant surprise! We are enjoying Fiegel Elementary!
So I am very behind in getting this updated and geting some new pictures posted ---- SORRY about that! Erinnne is doing well, overall. Her back incision, which did open up twice, has totally healed. We are still having problems with right hip/groin pain, which prevents her from sitting in one spot/position for any length of time. We still don't know why that is. Erinne starts school on Tuesday! We met the nurses, PT & OT at the school this week (which is being renovated) to scope things out, especially for the bathroom which was constructed just for her! When we were there on Wednesday the 30th, we could clearly see that the school sill had a lot of work left to do, but the principal was walking down the hall singng at the top of his lungs, "It's a beautiful day in the neighborhood..." (Mr Roger's theme song) It was very cute! I'll update after the first day of school!
Thursday, August 10, 2006
Erinne continues to make good progress, although she has been VERY sleepy as of late (sleeping 20-22 out of 24 hours a day.) I am trying not to worry too much about it and just call it part of the healing process. She has allowed me to take her "turtleshell" off a couple of times and sit her up, unassisted. It is a very scary experience for her, so we are taking it slow. I'd like to get her to shower and or swim without it soon. She misses playing with her friends a great deal, but I told her she has to be able to stay awake to do that! We saw her pulmonary (lung) docs this week who were very pleased with the success of the surgery and how it has "opened up" her chest. Hip/pelvic pain remains a problem and we are now trying another type of pain medicine. Thanks for checking in!
Saturday, August 05, 2006
Really Home This Time!
We are home and things seemed to have quieted down. On Tuesday it took the "IV experts" 7 pokes to get a line in her. Guess she was REALLY dehydrated! They said she picked up a virus (don't know how -- she has never left the house!) She saw her surgeon on the 31st and he is very, very happy with her x-rays and how she looks. He said it looks to him that like from the bottom of her pelvis (which is now actually level) to the top of her head that she straightened out almost 12 inches! I can see about 3.5 - 4 inches sitting height improvement. She got in the pool once this week (forced) and lasted about 5 minutes before she was howling to get out. Today, she is asking to go swimming -- improvement!!!! Gotta take her before she changes her mind!
Tuesday, August 01, 2006, 6:30pm
Unplanned ER Visit
This is Stacy here with an update on Erinne. Suzanne is taking Erinne back to Childrens as I write this. Erinne has a high heart rate, lower stats, vomiting ~ and is extremely lethargic. They think that her bowel may have wrapped around again, or that she may have an adhesion in the bowel. Poor Erinne ~ she has been through so much over the past month. She could really use some extra prayers right now. As soon as I know more, I will update you. Suzanne is going to try to call me back after she knows more.
Friday, July 21, 2006
Prayers answered! Erinne came home Tuesday afternoon and the first thing she did was sit with her brother and play a video game! That lasted 10 minutes and she realized she was done sitting and had to go to bed! We have moved her bed to the living room and Liz & I are taking turns sleeping downstairs with her. It was heavenly to finally sleep in my own bed last night! Her pain is manageable and back spasms and lessening. She was still having trouble pooping but after quite a bit of prune juice & Miralax, she finally broke loose today (she would die if she knew I told you that!) We also did a G-tube change and incision dressing change today and she survived all of that! We'll see the surgeon a week from Monday and I am looking forward to seeing the before & after x-rays. Hoping to get clearance to begin swimming (floating) then. I'd like to get her outside this weekend if I could. Thanks for your prayers and concern.
Sunday, July 16, 2006
Bump in the Road
So what's life without a complication or two????? Seems like Erinne has a blocked/twisted bowel which is not an unusual complication, I'm told, when one has a tremendous straightening of the spine. Looks like an Upper GI and a switch to a G-J (feeding tube that goes right into her small intestine rather than her stomach) is on the agenda for Monday, unless by some miracle it straightens itself out overnight. Her back pain is more manageable and she is off morphine and on Lortab. Also having to use Zofran for nausea & vomiting every 4 hours & Dilaudid earlier today. She has 2 very special visitors today who cheered her up immensely --- thank you Matthew and Alec for coming to see her. She loved the visits! Don't forget the new email address: Erinnesmom@gmail.com
Saturday, July 15, 2006
NEW E-MAIL ADDRESS ~~~~~~ NEW E-MAIL ADDRESS~~~~~NEW E-MAIL ADDRESS
****** NEW E-MAIL ADDRESS ****** I did not have a chance to import my address book before closing my WOW account (been just a little busy!) so now I have NONE! Please e-mail me so I can add you on my contact list ASAP. Thanks! Erinnesmom@gmail.com
****** NEW E-MAIL ADDRESS ****** I did not have a chance to import my address book before closing my WOW account (been just a little busy!) so now I have NONE! Please e-mail me so I can add you on my contact list ASAP. Thanks! Erinnesmom@gmail.com
Thursday, July 13, 2006
STILL IN THE ICU
Erinne needed to stay an extra day in the ICU due to pain issues and stabilizing her electrolytes and blood gasses. She did get her back drain, arterial line, foley catheter and 1 IV out, which leaves just 1 IV in. She is coming off her bi-pap for an hour at a time without any problems. So she is making progress. She has had a good night. The back dressing will be changed today for the first time. She will probably be transferred to the ortho/rehab floor later today and stay 4-5 days, discharging on Monday if we can get her up and moving around. She can have visitors starting on Friday. (The move to the floor today will be a rough one.) I'll post room information and the phone number later. Liz has been invaluable and Latte has handled the stress of the ICU stay beautifully! I am so proud of her! Thank you all for your prayers and well wishes. Love, Suzanne
Wednesday, July 12, 2006
BREATHING ON HER OWN!!!!
Erinne was successfully extubated/taken off the vent and put on bi-pap at 4:10pm yesterday! Her NG tube was pulled at the same time as well. They are coming down on her morphine which is unfortunately increasing her pain levels. Toradol has been added but so far has not quite gotten things under control. She has had a bit of anxiety coming off of bi-pap for more than a couple of seconds at a time. They have tried to restart her feeds at 5cc/hour but she isn't tolerating that at all yet. Her gut just hasn't started things moving through and consequently, she has a lot of nausea. It sure was nice to hear that quiet little voice again and get a kiss! Hopefully she will be moved to a regular room this afternoon. She could start having visitors on Thursday or Friday. Latte continues to remain at her bedside. I am pooped!
HANGING IN THERE.....
Sorry this has taken me so long to update. Hopefully you have already seen Liz's post for me that all went well. I have not left her bedside except for a short nap in the lounge early this AM. My computer is still in the car so I am finally borrowing one. Erinne was in the OR for about 7.5 hours, 5 of which were for the surgery itself. He spine has gone from a curve of about 100 degrees (sitting) to somewhere in the low 20 degrees now. She looks SO tall now! She is still in the ICU and still intubated (on the vent.) The staff here are doing a good job following the protocol for extubation. She has done more and more breathing on her own. She has been quickly weaning off the oxygen and will soon be breathing through the vent without any 02. We are using her CoughAssist through the vent tube and bringing up lots of yucky stuff. We won't be removing the breathing tube until these secretions are just about gone. She is comfortable but anxious to get the tube out. Latte was inconsolable waiting through the surgery. It wasn't until Erinne was in her ICU room and Latte could put her paws up on the bed and smell Erinne before she finally was able to relax and crawl under the bed and go to sleep. Her pain is being managed well with a morphine drip. We will also need to come down on the morphine before we can extubate. But pain management first. We will start her feeds (slowly) through her feeding tube this afternoon. HOPEFULLY, we will be able to extubate off the vent in the next 24 hours or so and then move to a regular room shortly thereafter. THANK YOU so much for your concern and prayers.
Monday, July 10, 2006
Just wanted to let you know that Erinne came out of her spine infusion surgery and is doing well. She went straight to the PICU and Suzanne is in with her getting her all set up. I am going to get the in/ex soon so that we can start coughing her, and they are going to try extubation tomorrow. It seems to have gone as well as planned, and I am sure that we will be out of here in a week without a hitch...although we could still use your prayers. Thanks to all of you who have been so supportive for Suzanne and I along the way. I know I certainly appreciate it, especially since there has been so much drama. Anyway, Suzanne and I will be trading off between Erinne's room and the Ronald McDonald House, so if Suzanne doesn't get a chance to post later, I will. Lots of love, Liz
Friday, July 07, 2006
After a long discussion with Erinne's surgeon yesterday evening, he has rescheduled her surgery for Monday 7/10 at 7:15am at Children's Hospital of Michigan. Many prayers for a smooth surgery and recovery would be appreciated. BTW, our new address: 8300 Honeytree Blvd Canton, MI 48187 cell: 734-560-1242 no house phone yet. no time! Suzanne
Thursday, July 06, 2006
Well, for reasons that have nothing to do with Erinne, and more to do with hospital politics, Erinne's surgery has been canceled for tomorrow (I believe this doctor is refusing to do any more surgeries at this hospital) and I need to find another surgeon very quickly. Erinne is a basket case. So am I. (I had to put my 11 year old Newfoundland down today and try and finish moving so this has been a REALLY crappy day.)
Saturday, June 24, 2006
Hangin' On By My Fingernails
Erinne is back from camp and she had a good week. Her broken arm is much better and I am not having to be quite as delicate when I move her. Right now she is soaking in the tub and plans on taking a bath for an hour, she told me. I didn't think it was possible but this child came home even MORE tanned than when she left!
The trip home was not uneventful, however. Something was rubbing around the right rear tire and making quite the noise and vibration. When I got off the freeway about 5 miles from home and turned left on to the VERY main thoroughfare, the van made a HORRIBLE clunking, crashing sound -- so loud that Latte JUMPED into my lap as I am trying to turn this van that I can no longer control on to the very small center median. I put it in park.....and it continues to roll. Doesn't sound good, does it. So here I sit, in the middle of a ton of traffic, and I can't get out, let alone get my daughter out with her chair. Putting the ramp down? Forget it! I couldn't find anyone at their homes when I called around for help. I finally get a hold of a car care place that was still open and had towing. About 45 minutes later, they get to us. Somehow, I had to get Erinne out of her WC and carry her out of the van without using either passenger side doors (traffic is whizzing by fast!) There is only room in the tow truck for Erinne and I. Latte had to stay in the van and she was having none of that! I had to tie her leash to one of the chairs just to make sure she stayed in place. When I looked back after we had started going again, I saw her up on the dash board, looking at us with a frantic look on her face. The driver was kind enough to stop at our house first so that I could unload Erinne's WC and all of her machines and camp stuff. Well, an hour later, the car repair place called me and told me that I need a new transmission, driveshaft, yolk and U joint. That, coupled with the tow and a few other things that needed to be replaced (like a new serpentine belt, since the van has over 70,000 miles on it) comes to about $3,200. I am in shock and feel a panic attack coming on.
You know, if the good Lord it trying to get my attention, He certainly has it. I just don't know how much more I can take of all of this. We're supposed to be moving out of here by the end of next week because I can't afford to live here any longer (and I am NOT ready to move anything) Erinne's surgery is scheduled for July 6th, for which I will be off on all unpaid time -- the bare minimum will be 2 weeks, but quite likely longer. My ex has disappeared into rehab which means the child support has stopped. Of course you can add Erinne's broken arm to the stress list. And the icing on the cake -- work itself has been VERY VERY stressful. I've become well acquainted with the end of my very frayed rope. I sure could use some prayers, if you wouldn't mind. This is getting pretty unbearable.
Wednesday, June 21, 2006
Up At Camp
I drove up to Lexington, MI (120 miles) today to see Erinne on VIP Day at MDA Camp. That is one of her favorite parts about this camp --- she loves that mid-week visit. Unfortunately, it rained ALL morning! So she didn't get to ride a Harley (also part of VIP day) or participate in the parade. OF COURSE it stopped raining and the sun came out by the time I had to leave!! But we did get some good snuggle time in this morning. And --- best news of all --- her arm is feeling BETTER!!! She is moving it a lot more than she was when I dropped her off on Sunday. I'll go back and pick her up on Saturday morning and then it's R & R for the next 11 days to rest up for surgery.
Saturday, June 17, 2006
The Healing Continues
Erinne's fracture has been a bit problematic this week. She did see her orthopedic surgeon (who is doing her scoli surgery on July 6) on Monday, 6/12/06 and had her arm re-x-rayed. He said this type of fracture is not uncommon in children, especially in children with bone density loss like Erinne has. He said it should not impact her scheduled surgery. I had her shoulder ace-wrapped to her body and he thought that was good. He said there was not much else we could do to help a humerus heal. During the week Kevin and I found it very, very difficult to move her without hurting her arm. On Wednesday, I called her pediatrician because we just could not manage her pain. She prescribed Toradol - an injection and then oral meds for 4 days. Boy -- was she upset with me when I snuck up on her and gave her the IM in her thigh before bed. As mad as she was, that was probably the best she has slept in weeks! I kept waking up during the night to make sure she was okay. We went back to the doctor's on Friday because it seemed like her arm changed shape where the fracture was. X-rays revealed that her fracture had shifted slightly, and was not as well aligned as it was on Monday. We changed her pain meds to adult Tylenol with codeine which has done a much better job of controlling her pain. The doctor also put her lower arm in a soft cast and then the whole arm in a sling. Erinne noted immediate improvement from the sling support. She must have thanked me 15 times in one day for the sling! Erinne will be leaving again for camp tomorrow -- this time with Liz (our babysitter and Erinne's second Mom!) so I am not worried about the arm --but more importantly, Erinne is not worried about her arm when she is with Liz. Now to just find the energy to get her packed again.....
Saturday, June 10, 2006
Well, the injury on Tuesday was a bit more than a muscle strain. Turns out, the top of the humerus (the bone between your shoulder and elbow) on her right arm is fractured about an inch below her shoulder. When I picked her up from camp, we went straight to her doctor's office. The x-ray was pretty clear, even to my untrained eye. Unfortunately, Erinne's orthopedic doc's office closed at 4:30, which is when we got out of the pediatrician's office. I have to call him first thing Monday morning. The fracture is not in a place that can be cast. It is very difficult to move her, or carry her and it causes her tremendous pain! It is also hard for her to drive her chair since she uses her right hand to drive and she does not have the mobility or flexibility in her left hand to do that. She also is having a hard time feeding herself for the same reasons. My poor Boo!
Wednesday, June 07, 2006
Erinne called me from camp yesterday and today. She hurt her shoulder in a bathroom transfer. She said she can't use her right hand to drive her chair. The doctor in camp checked it out and apparently felt it was a muscle strain. Today she sounded so sad, like she wanted to come home. But I didn't suggest that to her, as hard as that was! We pick her up Friday morning and already had an appt scheduled with her doc in the afternoon. I just want to go and get her now!!
Sunday, June 04, 2006
OFF TO CAMP!!!!
Well, she's off to her first week of camp! Kevin & I dropped Erinne off at Vent Camp, a little over 2 hours from here. Vent camp is for kids who are trached and vented or use bi-pap at night. It is put on by the University of Michigan Mott's Children's Hospital Pediatric Home Ventilator Program -- basically the pulmonary docs and their staff of respiratory therapists (RTs) and nurses. Erinne's partner this year is a fantastic RT named Rachel! I think there is something like 20 kids and some 30 adults. Her best friend Olivia goes too, and their beds are right next to each other. I know she is going to have a FABULOUS time!! We pick her up on Friday. Sure is quiet here!
Thursday, June 01, 2006
Erinne's blood type is A positive. If you are A positive and you'd like to make a direct blood donation to her, between June 7-27, to be used during her scoli surgery, please send me an e-mail and let me know. Thanks!
Wednesday, May 31, 2006
Pre-Op Stuff - Already!!
We spent the day today at Children's Hospital getting things ready for surgery on July 6th. We watched a video about the surgery (not the technical stuff, more like from the young patient's point of view) which didn't seem to make Erinne feel better. More like upset her more. We then went to have labs drawn. The tech had the warmth of a stone. Erinne told her that the only vein that would 'produce' was the one in her right thumb. The tech opted to take a stab at her left elbow. Nada. So then she finally listened to Erinne and attempted the preferred thumb -- which of course worked. No tears from Erinne, but she was ticked. She already has a huge purple bruise on her elbow. They are typing and cross-matching her blood because she will likely need several units of blood during the surgery. Once I get her blood type tomorrow morning, I will be looking for several direct donations. (I can't believe I can't remember her blood type! Out of all of the medical things I have committed to memory about her, this was one detail that has slipped my mind!) I will post her blood type here and if you are that blood type and are interested in being Erinne's lifesaving angel, email me or leave me a note in her guestbook and I will contact you. The only catch is, you need to live in the metro-Detroit area. We also met with someone from anesthesia to discuss the intubation and the general anesthesia. I gave the NA a 1 page medical history on Erinne that I put together, so nothing important was left out. I am not confident she "got it" -- she kept getting paged and answering her cellphone, and forgetting where we were. Aargh! I tried to tell her Erinne is going to be tough to intubate orally (as opposed to nasally) and it wasn't until we were almost ready to leave and she asked Erinne to open her mouth (which she can't do very well) then she sort of "got it." Sigh! I'm just planning on go over all of it again on July 6th with the person who will actually be working with Erinne. After that, we had to stop by the ICU and say hello again. Saw a few more nurses that we hadn't seen last time and then finally saw "Dr. Jeff" -- whom I believe was one of the docs instrumental in saving Erinne's life. He never gave up on her, even when things seemed pretty hopeless. He always seem to be the doctor on duty when Erinne crashed. (It sort of got to be a macabre joke because she crashed every Friday for 3 or 4 weeks.) Anyway, we capped the day with a visit to the surgeon who will be doing her surgery, Dr. Mendelow. He spent 2 hours with us, patiently answering all of my questions and reassuring Erinne this will be a good thing and that he will take very good care of her. (She is nervous about it.) He also loved meeting Latte and he took her and Erinne's picture to share with his family. And you'll probably think I'm crazy but he loaned me a DVD of an actual scoli surgery. I told him what I'd really like was to watch the surgery from an observation room (knowing that they probably would never let a parent do that) because I find medicine so fascinating. I've already watched part of it and it is very interesting.
Wow -- that's enough for tonight!
Monday, May 29, 2006
Erinne had her kids' birthday party on Saturday at a roller skating rink. She had it there last year too. It gives her and her best friend Olivia a chance to drive their chairs at full speed around the rink and keep right up with the rest of the kids. Erinne also got to see her other best friend, Matthew, at the party. Her face just lit up when he arrived. (They don't go to school together anymore so the times that they can get together are pretty special ones.) She had 13 guests present. (I was very happy with that.) We invited the whole class (how can you leave anyone out?) plus a couple of special friends like Olivia and Matthew, and all told, we *could* have had 28 there. Ah well -- birthdays only come round once a year, right?) And one thing Erinne has taught me is that you don't take birthdays for granted. You aren't guaranteed another one next year.
Happy Birthday, Boo!
Saturday, May 20, 2006
Poppa's 70th Birthday
We're up in Ludington, MI visiting with my Dad & Lou for my Dad's 70th birthday. My brother Gregg and s.i.l. Jodi drove with with Rachel & Noah from Kentucky and my sister, Lynette, and b.i.l. Tom drove up for the day with Madeleine. The cousins had a blast playing together and everyone fell in love with Latte! (Especially my brother & my Dad) We had a 2+ hour dinner at a restaurant and Latte was as quiet as a mouse the whole time. Kevin talked 90 miles an hour about hockey with his Uncle Gregg (who is just as passionate about hockey as he is.) Uncle Gregg also took Erinne in the pool and hot tub, which she loved! (She also loves her uncle Gregg a whole lot so that made it even more thrilling.) I'll have lots of pictures to post soon!
Tuesday, May 16, 2006
The 9th Birthday
Erinne's little angel friend and birthday buddy Devon Stants cleared out the clouds and gave Erinne a little sunshine to enjoy (first time in 7 days!) She asked me to bake 65 chocolate chip cookies for school today (she hates cake) and thanked me several times before she went to bed for baking them (sort of a reminder too!) Erinne enjoyed her day at school. When I came home from work, we went to Olga's, her favorite restaurant (where all she usually eats is a big bowl of feta cheese!) We met up with our favorite babysitter/second Mom Liz, her mom Sarah and sister Stephanie at Olga's. Then we were off to Best Buy to pick up one of her birthday presents --- a Nintendo DS and the Nintendog game (of course -- it has golden retrievers in it!!) Erinne has 25 email messages waiting for her today -- she was very surprised!
Tuesday, May 16, 2006
Happy Birthday, Angel !
It's just after midnight.......which makes this May 16, 2006. Erinne Rose Williams is now 9 years old. When she was diagnosed at the age of 14 months, I was told there was nothing that could be done for her and to take her home and love her.....and that she probably would not live past her 8th birthday. My life has been so blessed by sharing it with Miss Erinne. I have to give thanks to the Good Lord for entrusting me with this very special angel-on-loan. Happy Birthday, Angel!!
(I'll write more after we celebrate tonight.)
Friday, May 12, 2006
Erinne took a field trip to Greenfield Village yesterday (historical site for those of you not in Michigan). She had school in a 1 room schoolhouse which she thought was cool. Unfortunately, it decided to rain most of the day, and there is a lot of walking around outside. It was a very long day for her -- 8:30am-4:30pm which is a little more than she can tolerate. She did fine all day, but was absolutely exhausted by bedtime. So much so that when she fell asleep, she was not able to keep her oxygen levels above 90% or her heartrate above 60 bpm! She slept for 14 hours before she was ready to tackle school again today.
Last week, we went up to Children's Hospital in Detroit for a seating assessment for her new wheelchair. We also stopped by the ICU, where Erinne spent 3+ months back in 2001. Because we have kept in touch with the staff there, of course they remember her. Erinne introduced them to Latte. We told them she would be back as a guest July 6th, 2006 for her scheduled scoliosis surgery. Saw a few panic looks on their faces. I firmly announced that we were NOT -- NOT -- going to stay that long this time and there were going to be NO -- NO -- encore performances!! Erinne has mostly good memories from her stay there (all that lovely Versed!) so she is not dreading it nearly as much as I am. (I am already having nightmares again about it.)
PS. Erinne has reminded me that we are in the official birthday countdown ---- just 4 more days till birthday # 9 arrives!!
Latte's in school!
Latte has completed 3 days of school this week and has done quite well. One of the school district's nurses, Carol Haas, gave Erinne & Latte a very portable, folding kennel for Latte to rest in when Erinne is in gym class or outside at recess. (THANK YOU so much, Carol!!) Latte pretty much sleeps through class, which is exactly what she should be doing. Erinne was re-cast for new DAFOs this week and has some adjustments made to her new TLSO, which is still causing her pain and sore spots. Next week, Erinne will go down to Children's Hospital of Michigan for 'seat mapping' -- the process of analyzing exactly how she is sitting in her wheelchair and then ordering a cushion to best suit her needs. While we're down there we will stop in the ICU and say hello and we'll see you in a couple of months. Have a great weekend!
CRAZY FUN !!!
Liz here, wanting to let you know about the two crazy days Erinne and I just had. We haven't been getting to spend a lot of time together lately, as we were both sick and life has just been so busy, so we definitely had some catching up to do!! When I arrived on Thursday, she was ready to get going, so we got dressed and hit the road...ps her new shell is VERY difficult, Suzanne is amazing! We decided that we were going to solicit donations for MDA camp and an SMA Gala that our local MDA is holding, so our first stop was to the SMA Office. After a million hugs, kisses, photos, and illegal petting of the dog, we were definitely ready to get out of there. Next we grabbed a quick lunch and headed off to the Detroit Zoo! Erinne thought we were just going to ask for a donation and asked me if we could "just peek at the animals for a minute", which cracked me up. We stayed at the zoo for a few hours, and when we were hot, tired, and exhausted, we headed out. Erinne said she wasn't ready to go home and wanted to know what we were doing next, so we decided to head to the movies. We saw Ice Age 2 (my second time...I need to start going to the movies with grown-ups :0) ) and Erinne loved it. She ate TONS of popcorn, as usual, with more salt than I can even fathom. By the time I left her house, we realized that there were only nine hours until I would be back, and she told me she was going to count down the hours every time she woke up at night :0) I was there at 6:45 this morning, so I just wore my pajamas and climbed into bed with Erinne. After I had been a sleep for about an hour I heard "I'm up!" It was about 8:30, and I tried to talk Miss Erinne into sleeping a little longer, which was a no-go. She said she COULD but she didn't want to. Of course. :0) So we played NHL 2004 or something like that, which I am bad at so I got kicked out of the game by you-know-who and had to just watch her play. Finally, we headed out to this arcade that we love, and spent tons of money on playing games. We won 800 tickets, so that was nice, and Erinne got a model Harley Davidson and some Mini M&Ms. The most exciting part of the day was when Erinne decided she wanted to try this fighter jet game, which was ridiculously difficult to get into, and once we were in we discovered that it throws you everywhere so I was fighting to keep her head from tossing around. PLUS my cell phone fell out and we forgot so I was without it for like an hour before we remembered and went to find it. After the arcade we went around to ten local businesses trying to get a few more donations, and then finally, two exausted girls...one of whom was being pushed in manual while she just "rested her eyes" ... and one exausted dog hit the road to meet up with Suzanne. We had a great two days, but I think we both will need two more to recover!! So that's about it. Sorry it's so long, but we really were Crazy Busy!
Back in the Saddle Again...
As quickly as Erinne got sick, she just as quickly bounced right back. Must've been those good antibiotics! By Friday afternoon, she felt much better and was able to get outside for a little sunshine. We went to Claire's new house for Easter dinner (she did a good job!) Easter Day was rather dreary and rainy, so our egg hunt took place inside. Latte even got in to the act and helped find the eggs without being asked! (We quickly found something else for her to do!) On Monday 4/17, Erinne had a CT scan of her chest, to look for any structural abnormalities other than the scoliosis. Latte will be starting school with Erinne on Monday the 24th.
Under The Weather
Miss Erinne has started her Easter school break a day early. She has picked up a nasty bug very quickly. When I took her to school this morning she was fine. But as I arrived at work, I got a call from her wonderful nurse at school, Melanie. She said Erinne had spiked a temp, complained of a sore throat, had swollen glands in her neck, said her chest was tight and was coughing up greenish junk. All in a matter of 2 hours. (Thank you Melanie for being so on the ball and knowing what is normal for Erinne and what isn't!) Must be one heck of a bug. Erinne's doctor's office was terrific about getting us in so quickly (thanks, guys!) and her doctor did a great job, as always. (Thank you Mirta!) She hasn't reached the point where she feels horrible (hope we don't get that) and wanted to join the game of pick up hockey going on in our driveway when we arrived back home. I think not! So hopefully, we have nipped this in the bud and be ready and able to do an Easter egg hunt on Sunday.
The Bonding Continues...
Erinne and Latte continue to bond, enjoy each other's company and love to be together. They definitely do not like to be apart while Erinne is at school. After the Easter break, Latte will start going to school with Erinne for short days and we will work up from there. The other two dogs returned home from "doggie boot camp" (at my ex-husband's apt) and haven't batted an eye at this newcomer. Latte, on the other hand, is a little intimidated by Burt's size (a 160# Newfoundland) but at the ripe old age of 11, he is hardly a threat. All he wants to do is sleep. Henri, the Yorkie, keeps trying to steal all of Latte's toys and rawhides -- even the ones bigger than him! Burt and Henri are in for a surprise because they are both going on diets! No longer will they have a bowl full of food available all day. They are going on a feeding schedule just like lean Latte! The cats are still unsure of exactly what kind of animal Latte is since she doesn't behave like the other dogs -- so they continue to ignore her. Be sure to check the picture page, as I will post new pictures weekly. Thanks for stopping by!
HOME SWEET HOME!!
We're back! We arrived here around 12:45pm, after a very early departure from the hotel. The Atlanta airport was a nightmare and I hope to never fly through there again. Despite getting there early, we spent forever trying to check in our luggage curbside (the line to check in at the counter inside was several hundred people long.) Security of course is always a delay because of the amount of vital medical equipment we carry on. We found ourselves running through most of that huge terminal -- and that was no easy feat with the 3 of us. It was such a struggle. We made it to the gate 11 minutes before take off. You must be at the gate 10 minutes prior or you can't board - period. It took me 15 minutes to get everyone/everything on board. I got a lot of frustrated looks as I carried Erinne in, and then went back to get the dog .... then the bags.... then the equipment.... and of course the overhead bins were all full. SIGH! Then they could finally take the wheelchair downstairs ...and loaded it. Which also took time. Needless to say we delayed the departure. Latte was very confused as to why I took Erinne out of the chair and carried her into the plane and left her tied to the chair. I came back and got her. She got into the plane okay (which I was concerned about, because there was a gap between the plane and the gate) and down the isle, but when it came time to go in the row, she balked. She was just very stressed. I had to pick her up and put her in row with Erinne, telling those around me that is was her first flight and she was a little scared. I still had to go back for 3 more trips and Latte did not want to stay with Erinne. Argh! Erinne had a hard time hanging on to the leash. FINALLY, we settled in. Latte slept through most of the flight. Just before we touched down, she was having a hard time holding her ground and not sliding. So I am bracing her with my legs and right arm and bracing Erinne back in her chair with my left because there are no shoulder straps and she was falling forward into her lap. Eventually, we got off the plane after everyone else -- and the next crew was patiently waiting to get on. I was not the least bit surprised to get down to baggage claim --- and find that 3 of our 5 checked bags did not make the flight. They were still sitting in Atlanta, in that zoo. They promised to deliver the bags this evening. Erinne was ready to go to bed at 7pm, and some of her equipment still was in those bags. (There is a limit as to how much I can carry by myself.) I had to finally put Erinne to bed, and hope that the bags would get here -- tonight, as promised. Three phone calls later, the bags finally arrived at 11pm. Latte has done well since we have arrived home. The dogs are away for a while, while she adjusts. The cats were a little put out, but are slowly warming to her and Latte has not been cuffed -- yet. Just a few hisses. Kevin is totally in love with Latte and Erinne has allowed them some snuggling time. The bags are sitting by the front door, absolute necessities removed. I am off to bed!
Canine Assistants Graduation Day
It is almost 12:30am and I am still packing. We will leave the hotel at 7:00am to catch our 9:45am flight. I am utterly exhausted as are Latte and Erinne. I can't believe this is over. Our field trip this morning was --- interesting. We had to do a solo scavenger hunt through the mall and take pictures of various things and people on our list. So I had this brilliant idea to take a picture of the Easter Bunny and Erinne and Latte for the hunt. I quickly learned that Latte will not have anything whatsoever to do with huge cartoon characters. We got up to the bunny before she realized that thing was real. She started growling and then the "flight or fight" instinct kicked in. She decided to make a run of it ..... except that she was still tethered to Erinne's chair. She tried to fight the choke chain and leash. I'm trying to calm her and at the same time, get Erinne to back up and get the EB out of her line of sight. In the process, she pees on the floor. What a disaster! I finally got Latte to quit trying to run. I picked up my broken digital camera. Then I cleaned up the floor and we took her out to the nearest exit for some fresh air. She kept looking behind her like the EB was chasing her. I am thinking, "Man, I have TOTALLY screwed up this dog and destroyed the trust she has in me." She finally calmed down as much as she was going to until we got back in the car. We were supposed to meet up with everyone at lunch, including the trainers. I found one of them and told her what had happened. Then I have this stranger come up to me and introduce herself and tell me she is a CA volunteer and she had been following us through the mall, observing us. I am thinking terrible things at this point. Then she said that she witnessed the 'incident' an we handled it beautifully. I said, "You were following us the WHOLE time?" (We were all over the place -- willy-nilly, back and forth.) She said that CA has about 100 volunteers in the mall for the last solo trip, observing all of the teams. I could not believe that I didn't notice her following us. And I sure as heck am glad that I did everything right. Whew! I'm GLAD its over! Graduation was beautiful and the slide presentation of the recipients and their dogs was a tear jerker. What was even more touching was that we each received a copy of it. As soon as I can figure out how to post a link to it, I will put it up so you can see it. The room was filled with all of the volunteers who came to say good-bye to their babies and meet the recipients. One of the TV stations was there as well, as was Jennifer Arnold and her husband, Dr. Kent Bruner. She commented that this was the highest scoring class they had ever had (the lowest score in our class was 89%) and that there were 2 perfect scores (Erinne being one of them!) My friend Tonya and her son William came down and spent the day with us and also went to the ceremony. It was wonderful to have them there (thank you, Tonya!) So now we make the trek home. I think Kevin will be glad to see us. I will be happy to sleep in my own bed. And Erinne? Erinne is happy, no matter where she is, no matter what is what. What a kid! I will post the pictures in the next couple of days. I have to finish packing!
Training Day # 11
What a difference a day makes! I was not able to log on to the 'net yesterday and did not have the time to figure it out. We had to study for our final exam today and we had A LOT to review! We took a trip to downtown Atlanta yesterday morning and Erinne and Latte did great! The weather was BEAUTIFUL -- warm and sunny -- which made the walking around so pleasant! Then we came back home and studied. We were give 8 (!) essay questions which was part of the final exam that had to be completed before the test today. After dinner, 6 of the recipients (Erinne's age and older) gathered in the lobby for a few rounds of Jeopardy - Canine style! The exam was first thing this morning. It was 4 pages of multiple choice, fill in the blank, short answer and true/false. Erinne read the questions to herself and then whispered the answers to me. You had to get at least a 70% in order to pass. Well, Miss Erinne, one of the two 8 yr olds in the class, scored a perfect 100% !!!! I was sitting here last night, burning the midnight oil because I was afraid I was going to miss something and screw up the test. Guess I didn't need to worry! Miss Erinne had it all memorized, much to my surprise! After lunch Erinne then needed to demonstrate mastery of the commands and control of her dog. She had to do this in front of the rest of the class, all of the trainers, the founder, Jennifer Arnold, other CA staff and about 25 invited guests who were new sponsors/donors to the organization. I sat in the corner biting my nails. All of the rest of the recipients either had their parent/caregiver on the floor with them, or were able to step out of their wheelchairs to point out commands to their dogs. Erinne did it all alone. This was *her* time to shine all on her own. The founder, Jennifer Arnold, asked her (remember, this is in front of a huge crowd of people) to give her dog 2 commands, using just her eyes. No hand signals, no body movments, no words. And you know what ---- SHE DID IT!!! I am SO proud of her and Latte! The hard part is over! Tomorrow we have one last field trip to take to the mall again (who by the way, called CA and said they did not want us to come anymore --which is illegal!) and demonstrate that the recipients can handle their dogs in large public places. After that, we'll have dinner one last time together and then the graduation ceremony is at 7:00pm. I cannot believe this is just about over! We head to the airport at 6am on Saturday. I am sooo not a morning person! I sure hope a nap is in my future on Saturday afternoon!
Training Day #9
Today we met with the CA's vet in residence (also married to the founder of CA, Jennifer Arnold) to learn abut dog care, illnesses, immunizations, basic first aid and toured the CA's "Farm." Besides the usual assortment of barnyard critters, they have 10 horses (several of which were abused and rescued) that participate in a therapeutic riding program, about 60 puppies/young dogs in training and a number of older/almost-ready-to-leave adult dogs ready for the next class coming up in June. We didn't see the nursery building where they keep the newborns because there aren't any right now. They also have an indoor swimming pool just for the dogs who need a little extra exercise or who are unable to exercise on dry land. After that, Erinne and Latte got their professional pictures taken. Tomorrow we head to downtown Atlanta for the "big city" test! And lest anyone think we are loafing around down here, we were also given 8 essay questions to start on, in preparation for our final written exam on Thursday. Yikes!! I can't believe our time here is almost over.
Training Day #8
We FINALLY saw some sunshine!! Today we had another field trip to TGIFriday's and then out to the movies. Erinne picked "The Shaggy Dog" to see, along with most of the boys. Latte listened and behaved very well. No noise, no munching on the popcorn on the floor or the gum stuck under the seats (don't laugh -- one of the dogs did!) One or two of the dogs started barking at the screen when the on-screen dogs started barking -- a big NO NO! They were silenced very quickly! Tomorrow we are back in the classroom to listen to the Canine Assistant Vet, Dr. Kent. We will also finally get to tour the Canine Assistant "Farm" and see all the dogs and puppies in training, and also the therapeutic riding horses. We can't wait! (I had some problems posting pictures tonight so check back tomorrow for those.)
Training Day #7
Late Sunday evening..... Very low key day. Erinne and I are both a bit under the weather so we lounged all morning. Latte didn't seem to mind. Then we headed out to Walmart again for cough medicine and more Kleenex! Erinne's not running a temp and so far is able to handle all of the extra secretions. Unfortunately, we were not able to get together with my friend Tonya and her son, William (who also has SMA.) We didn't want to risk exposing him to a possible bug. We went out to a pizzeria/sports bar (chosen by the trainers) with the group for dinner . Some of our little doggie friends did not handle the noise & darkness very well. It was pretty crowded and loud. There were also 17 TVs contributing to the noise. Latte just plopped down next to Erinne's chair and went to sleep (no room for her to crawl under the table with all of the other dogs and wheelchairs like she has been taught!) Her instructor Lindsey came around and complimented Erinne on Latte's behavior (or lack thereof!) She said Latte must be pretty comfortable and trusting with Erinne to fall asleep in all of the chaos. We came back from dinner and Erinne went right to bed at 8:15p. Her back has really been hurting her this week. Sure wish the new TLSO (scoliosis back brace) would have been ready before we left. She is trying to wear this one as long as possible each day, but it does hurt her. Tomorrow we are off to the movies and out to lunch. Doggies are not supposed to make any noise during the movies so we'll see who the quiet ones are!
Training Day #6
Saturday: Today was a little more of a laid back day -- no classroom work. The only thing we had to do was go to the mall this morning, walk around with Latte and see how she handled the crowds. She is not allowed to sniff at anything/anyone whatsoever. Erinne and Latte had to show that they could negotiate crowded stores and displays. They did GREAT!! The trainers and volunteers are scattered throughout the mall, observing how the teams do. We then met up with the other teams and trainers for lunch in the food court -- another tempting area for some dogs. The dogs again are not allowed to sniff at anything and cannot eat anything on the floor. Some of the dogs had a hard time with that, but not Latte! We have tomorrow morning off and will meet up at a restaurant with the teams for dinner, again, testing the dogs' abilities to ignore some really good food, other diners and people trying to pet them. I am just looking forward to having the morning off! I am fighting a cold and Erinne is battling a cough so I think the down time will help both of us.
Training Day #5
Today Erinne & Latte practiced turning light switches on and off, and the 'alert' command (where Erinne will tell Latte to come and find me and take me back to Erinne) and reviewed other commands learned this week. Finished our last quiz (thank goodness!) before the written final next Thursday. We took individual and group pictures and then headed to Walmart for our first field trip! Latte did great and even passed the dreaded "spilled-dog-food-in-the-dog-food-isle" test by listening to Erinne's "Leave it!" command. Tomorrow we head to the big mall for more distracting tests!
Training Day #4
"The girls" are officially a pair! Latte is now with us at the hotel. I took some great pictures of them bonding and snuggling. That's the goal for the next 3 days -- bonding. We've had to rethink the way we interact with her. Latte has to think that Erinne is the alpha dog and provides the food. One way to do that is for me to put Latte in another room when I fill up her food bowl. Then I put the food bowl in Erinne's lap (in this case, she was sitting on the bed.) Then I let Latte in where Erinne is sitting, and she eats next to Erinne. As far as Latte is concerned, Erinne is providing the food. ~~~~~~ When we came back to the hotel, I set Erinne on the bed, minus her leg braces. Her legs were kind of floppy and sort of bounced on the bed, not quite crossed, like she likes them. Before either of us could move, Latte jumped up on the bed and picked up Erinne's (sock-covered) foot and moved it up to her lap! Erinne was too surprised to do much more than yell, "HEY!" Even though Latte has a very gentle mouth, her feet are still very sensitive. Then Latte picked up Erinne's shoe and carried it to the door and set it down. Her trainer described her as an overachiever! Today Erinne got Latte to pick up a pen off the floor, tug open a drawer and retrieve the TV remote and put it in her lap! Tomorrow we take our first "field trip" to Walmart!
Training Day #3
This was Erinne's and Latte's first day together. Once we arrived, Latte was taken out of her kennel and was attached to Erinne's chair for the rest of the day. Erinne was responsible for pottying Latte -- but, interestingly enough, Latte did not need to use the potty all day! Erinne also took Latte outside for some exercise/a short run and they did well together. They worked on several commands: "jump up" on a table, "nose it" for a button on the wall (like a elevator), "up/push" to close a door and "go in" to go under a desk or table and lay down. By the afternoon, they didn't need me following behind their every move to make sure things went smoothly. The work continues tomorrow and then Latte comes back to the hotel with us for good! Erinne can hardly wait!
Training Day #2
INTRODUCING..................... Erinne & Latte!!! Erinne has been matched with the most beautiful golden named Latte! She is PERFECT for Erinne!! Their personalities are almost identical! Latte is very sweet, a little bit shy, most of the time quiet and very calm. Erinne and Latte fit like a hand and a glove! We get to bring her home (to the hotel) on Thursday. It was so sweet this afternoon -- the match was announced at 4:00pm. Latte went up to Erinne and did the lap command right away. Then each recipient had a chance to spend a little 1 on 1 time before we had to leave. I took Erinne out of her chair and sat her on my lap, on the floor. Latte crawled up on Erinne's lap and the 3 of us snuggled until every other dog was put away and then we were told it really was time to put her back and head back to the hotel. Now mind you, these dogs have been a bit wild the past 2 days and stressed because moving from person to person and being handled by so many different people puts them at the edge of what they can tolerate. Latte was no different. But when the match was made, I think Latte was relieved too that it was all over. I think that's when she told us she was happy with Erinne, and crawled up on Erinne's lap as if to say, "This is where I belong." Erinne is ecstatic!!! We can't wait to get her back here with us!
Canine Assistants Training Day #1
We survived our first day of training!! My brain hurts! We will be tested tomorrow on the materials we learned about today -- the 3 styles of learning, 3 types of learing and the Inverted U Theory -- as it applies to canines, to name a few! Erinne worked with 9 dogs today and will work with the remaining 4 tomorrow for a total of 13 dogs for 10 kids (3 speciality dogs have aready been placed with other classmates - a hearing dog, a seizure response dog and a CASE (community ed) dog.) Erinne has already developed a preference out of the ones she worked with today. Tomorrow afternoon she will know which one will be hers. One of the dogs on her 'short' list is a Labradoodle -- labrador and giant poodle cross. He's pretty goofy looking! He is the black dog she is with on the picture page. More tomorrow!
Hello from Atlanta!! Wow -- things are in bloom down here! Erinne noticed right way that everything is green -- and flowering!! We have arrived and have taken up residence in our new home away from home at the AmeriSuites hotel in Alpharetta. It is very nice! We met up with my friend, Tonya (another SMA Mom) for a short time this evening. We start at 9:00am tomorrow! No pictures tonight.
Well, in just 12 short hours our plane takes off for Atlanta. I am a little worried because Erinne does not seem like she is feeling well. A lot of throat clearing and I found a gland swollen in her neck. She asked to be put to bed at 9pm --- unheard of on a Saturday night for her. She says she is just really tired. I expected her to be too excited to sleep. No temp, but she complained that her stomach hurt and she had a headache. But at the same time, insists that she is "FINE!" I am hoping and praying that she is.
Well, we are closing in on the final countdown --- 6 more days. We can hardly believe it. I have begun packing the supplies that I am mailing down to us. Erinne had the pleasure of having Colby from Canine Assistants come to her school to visit. The students seemed to really enjoy the assembly. Hopefully listening to what Colby's partner, Mary Roderique, had to say about how to act with a service dog in school will help everyone adjust next month when Erinne's new dog comes for a visit. The children also collected over $325 in "Coins for Colby" -- a donation to Canine Assistants. I am so proud of them!
Erinne "test drove" a couple of new wheelchairs today and has decided she would like a red Quantum 6000 for her next chair. It has a 6 mid-wheel drive system which is very different than all of the other chairs she has had. She absolutely LOVES it! She says she felt like she was walking when she was turning the chair around in circles. This new chair will have several different features than the one she has now. The total price tag for this new chair (you are sitting down, right?) will be between $30,000-$35,000. Can you believe it?? Of course with that price tag comes A LOT of paperwork and letters of medical necessity. We are looking at 3-4 months before she will have it. She was also bodycast (is that a word?) for a new body brace called a TLSO or turtleshell, as she calls it. She just had this one made last June, but because her scoliosis has advanced rather quickly the past several months, she needed another one before her July surgery. We also received some VERY good (unexpected) news today ---- GM/Blue Cross has APPROVED the mattress I have requested for her! You about had to pick me up off the floor after I received that phone call! This is also a pretty big expense -- $25,000. But this is a very special mattress that will address her respiratory issues as well as her scoli issues while she is in bed. She'll have this mattress for the rest of her life. So definitely a good news day! --------- 18 days until we leave!!!!
Countdown: 22 days!! Erinne and I are both very excited! We're starting to think about what to pack, and what we have to mail down (supplies) to get us through 2 weeks of training. I've never gone anywhere alone with Erinne for two weeks, and flying no less! It is going to be a challenge! Erinne is worried that she will get sick before we leave and her doc and I assured her that THAT is just not going to happen!!! On March 10th one of the Canine Assistants community ed dogs, Colby (whom Erinne just loves!) from Ann Arbor, will be coming to Erinne's school to do a school assembly and help the students understand what it is going to be like to have a service dog in school, and what they need to do to help Erinne and her new dog adjust. I am really looking forward to that assembly! We'll be busy the next couple weekends before we go. Next weekend we are driving to Holland, MI for the weekend so that Kevin can play in a hockey tournament. (Sure hope my dad and step-mom will come down for the games!)The following weekend Erinne will be going to a hotel for a girls night out sleepover with her MDA camp friends (bless you Liz for doing this!) and then the following weekend, we pack up and fly out! More later!
We are making progress! Erinne has recovered from the ear infections and raw throat, but the fatigue remains. She is attending school about 4 hours a day. Sure wish I could figure out what is causing that. Now Kevin is down for the count -- he has influenza! YIKES!!! I am hoping and praying that the flu shot does its job -- that is the last thing Erinne needs. Kevin is miserable. The doctor had to give him very explicit instructions --- "NO HOCKEY!" He gave a little lip service to that, but he is feeling too miserable to fight back -- much! ----------- 32 days till we head to Georgia!!!
Tuesday Evening Update: Last night was quite rough as Erinne's heartrate stayed up, as did the temp and her SATs were on the (too)low side. About 4 am her fever broke, only to return when she woke up at 10:30am. We went to the docs this afternoon and were happy to find out that it is *only* bilateral (bulging) ear infections and petechiae (small broken blood vessels) in her throat. She is on an antibiotic and we'll see if that clears these symptoms up. I am hoping she'll have a better night. Right now she just has that "I feel terrible" face on and asked to be put to bed at 8pm!!
Erinne seems a bit under the weather tonight. It's 11:30pm and she is sleeping, but not well. Her SATs have been dropping into the 80% range, and her heart is tachy in the 120-140s. (This, coming from a kid whose sleeping heartrate is in the 50s!) Her temp is 100.9. Not steep, but something is definitely brewing. Looks like it's gonna be a long night. She wanted to sleep in a turtleneck and was shivering. This same child sleeps in just a t-shirt because otherwise, she roasts all night in a room that is 62 degrees. Her lungs are clear for now. She did a lot of throat clearing today when we went to see her physical medicine-neurologist. We discussed the upcoming scoli surgery and he was disappointed at how much her scoli has worsened in the past 4 months. We have some things to accomplish before that day (July 6th) like getting a new back brace (easy) to getting her new $25k wheelchair approved, ordered and here (very hard!)Hopefully by this time tomorrow things will have improved for Miss Rosie! Prayers much appreciated!
Erinne had a hoelter monitor (24 hour EKG) done 2 weeks ago and I finally received a fax of the results today. I was told by the pulmonary doc's office that the results listed in the computer at the hospital were "normal." Yet, the report from the cardiologist that I received today said she had multiple episodes of bradycardias (too slow of a heartbeat) into the 40s and 50s while sleeping. Uh... HELLO???? Anyone see a problem with that? Those are the very same events that I brought her in to be evaluated for. I am now waiting to see the report (I have to see it myself before I believe it) from the sleep study to see if they reported the bradycardias as well. I could not see the monitors during the night so I do not know what Erinne did while sleeping. I was very disappointed in the sleep study parameters as the pulmonary doc wrote to put her on oxygen as the first step when her SAT (oxygen saturation levels) dropped below 93 for longer than 5 minutes. That occurred within minutes of her falling asleep, as I expected. But since her CO2 levels did not rise, they would not allow me to put her on her bi-pap. Giving someone with neuromuscular disease oxygen to get their SAT levels up is like putting a bandaid on a cancer. Giving oxygen 'tricks' her body into thinking "Oh, I don't have to work as hard -- I'm getting plenty of oxygen just the way I am breathing" and starts a downward spiral and does more harm than good --- and adversely affects pulmonary function in the long run. WHY I am having to argue this point with the pulmonary doctor's office is beyond me. I said to the pulm doc's nurse that I thought the sleep study was supposed to replicate what I am doing at home so that they could SEE what Erinne is doing in her sleep. I was told, "Not necessarily." If I would have known they had planned to give her oxygen during the sleep study, I would have canceled the appointment. Erinne did tell me the next morning that she really liked the mattress she slept on so I started the ball rolling on getting her this specialized mattress. OF COURSE the insurance company is denying it, saying it is not medically necessary and demanding a letter of medical necessity from Erinne's ped. I absolutely LOVE fighting the insurance companies -- I have nothing else to do with my time! And on a slightly different note, I had a short stay in the step-down coronary care unit at the hospital last week -- as if I don't have enough excitement in my life! I had been having chest pains for 2 days when I finally decided to see my doc -- who sent me right over to the hospital for an admit and cardiac workup. Turns out my potassium was too low. There was a slight change in my stress EKG as compared to the one I had almost a year and a half ago but not enough of a change to warrant intervention by the cardio docs. I also had a virus that I had been battling for 4 days prior to the onset of chest pain and they think I may have pulled a muscle coughing from that. (I didn't, because I wasn't coughing at that point, but whatever!) I am sure stress played a big part into that problem! I received lots of advice from many people (including probably some who are reading this now!) but since no one can suggest a concrete plan to help me/relieve me of some of this stress, I'll just keep plugging along, the best that I can. On a happier note, only 48 more days till we leave to pick up Erinne's new best friend!!!!! Thanks for stopping by!
Erinne had her appointment at the hospital today with the general surgeon. He reviewed the tests completed last week. He said her nissen (stomach surgery in November 2002) did come undone a little bit, but he felt it would be more problematic and complicated to fix. The diaphragm issue is not so easily solved. He doesn't feel like surgery would fix the problem......but has no other solution to offer to correct the lung function/heart displacement (slight)issue. She goes in on Wednesday evening for an overnight admission/testing. The surgeon wants an additional overnight test added to the ones the pulmonary doc has scheduled so we are trying to put them all together. I am waiting for a call back to see if we can combine everything. While I am happy that he feels she doesn't need surgery, I am a little frustrated that we still don't know anything more on what to do to correct the problems she is having. I'll post again later this week. Thanks for your prayers and concern.
Yesterday (1-15-06) we were given an opportunity, (thanks to the wonderful Curley Family!!) to attend the Detroit Red Wings Season Ticket Holder Open House down at the Joe Louis Arena. Erinne was able to drive her chair out on to the ice and whiz around at her usual breakneck speed after an open skate (which Kevin and his buddy Brandon did)and before the Zamboni came out. It was kinda funny because the person escorting us around asked, "You probably want to push her out to center ice, right?" And I said of course. Erinne looks at me and says, "Why can't I just drive out on my own?" To which I told her in a stage whisper, "He probably doesn't know how well you drive!" When she got the go-ahead, she took off like a bat out of you-know-where and almost completed her lap before the Zamboni came out and I called her over to center ice for a picture. The Red Wing rep was astounded at how well she drove, and how fast she was. I told him she was going about 6 mph but her next chair next summer would be faster. When his jaw dropped, I told him she plays wheelchair hockey and she needed a faster chair to keep up with her team! She could have stayed out there for an hour (and she thought she should have been able to!) but we had other things to see. She got to go in the Red Wings locker room (practically the Holy Grail to us hockey fanatics!) and pose for some pictures in front of Chris Osgood's locker. She was disappointed that the Wings had the day off from practice (they had just played the day before and didn't have another game till Wednesday)and she didn't see anyone to get an autograph on her new Wings jersey we bought the day before. We also got to check out the "Super Suite." All in all, she had a good time, as did Kevin. She was exhausted when we got home 4 hours later and asked to take a nap -- which is so unlike her. Hopefully she is not coming down with anything! She has 2 tests scheduled at the hospital this Thursday so I will update more then.
Today was a l-o-n-g day. We had to be at the hospital (University of Michigan - Mott's Children's Hospital) for testing and to meet with a couple of specialists. Trying to figure out what is going on with her heart and her left diaphragm. Started off with a chest x-ray (CXR), which, compared to the CXR taken 5 weeks ago showed that the diaphragm is even higher. We can visualize 7 ribs this time. Her heart is 'slightly' enlarged and is a little off center, likely from the diaphragm pushing it out of the way. Met with the pulmonary docs and respiratory therapist and discussed the "Well, it could be ..." Confirmed the sleep study scheduled for Jan 25th. We agreed on getting an upper GI to see if her nissen fundoplication (tightening of the top valve in the stomach)is still intact from 3 years ago. Scheduled a fluroscopy of her diaphragm to see if it is functioning at all, and if it (previous plication, 4 years ago) needs to be redone. If it does -- then when? Now, or during the scoliosis surgery July 6th? Got an appt. to speak with the general surgeon who initially did her nissen (stomach.) Then off to see the cardiologist. EKG and a 3 hour ECHO (ultrasound of the heart, and no, 3 hours is not standard procedure!) That doc feels the problem is the diaphragm. EKG was normal. They agreed to put a 48 hour heart (hoelter) monitor on Erinne to see if they could see what the heck her heart is doing when she is asleep. That was what I was hoping they would do. The possibility existed that they would have admitted her for monitoring, and I am VERY glad they didn't have to do that. Finally found a cardiologist who readily admitted that "We just don't know if there are cardiac conductivity issues with SMA." That may sound like a little thing, but when you hear doctor after doctor say, "But Mrs. Williams, there aren't any heart issues associated with SMA. You don't have anything to worry about" it makes me want to scream -- because -- NO ONE knows enough about SMA yet to make that claim! Erinne was worn out -- and I am exhausted. Here's hoping and praying we have a quieter night. I am hearing monitors alarming/beeping in my dreams. Thanks for stopping by....
Merry Christmas! I just realized it has been a very long time since I did an update. Sorry about that. Erinne has not had any infections/illnesses since I last wrote. But she has developed another sort of challenge that I am trying to figure out how to deal with it. For the past several months I've noticed when Erinne is sleeping that her heart rate drops very low -- the lowest has been 49 bpm. Less than a beat a second -- pretty low for an 8 1/2 year old. Her SATs (oxygen levels) are also very low -- in the mid 80% range. I took her to see her pulmonologist to try and figure this out. I have monitoried Erinne for a very long time and I know what is her normal range and what isn't -- and this isn't. No one seems to know why her heart rate is so low, nor are they concerned about it. But I am. There is still so much not known about SMA and heart issues are one of those things. I have known of 6 SMA children just in the circle of families I network with whose children have died of undiagnosed heart issues. Just this month, one of my dearest friends, Stacy Saville, lost her beautiful, healthy daughter, Morgan, to an undiagnosed heart issue. Morgan was 3 years old and stronger than Erinne (she also had SMA type 2.) Morgan was playing with her dolls one minute and the next minute, she was dead. That quick. Morgan was showing some of the same symptoms while sleeping that Erinne now is showing. Stacy had a cardiac workup done on Morgan, which turned out fine. I have also had a cardiac workup done on Erinne this year, which was also fine. Three of the leading neurologists in the USA specializing in SMA (one in Utah, one in Wisconsin and one in New Jersey -- whom Erinne has seen) feel there is a heart component to SMA -- but we just don't know what it is yet. There are no current studies underway that are looking at this. So here I sit, watching Erinne's monitor while she sleeps, and worrying that there is a problem brewing that I don't know about yet. I talked with the cardiologist that evaluated Erinne this past spring and he said he felt Erinne's issues with a low heart rate are related to pulmonary issues and not cardiac issues, and he didn't feel that another cardiac workup would be of any help. The low SATs I think I have a pretty good idea what that problem is. Back in 2001 when Erinne had a 101 day ICU hospitalization (and intubated for 85 of those days),she needed 3 chest tubes on her left side to keep her left lung inflated. An unfortunate complication of a chest tube is it can traumatize or even nick the phrenic nerve -- the nerve that controls the diaphragm. Unfortunately, Erinne's was nicked/cut. After 3 mos into the hospitalization, they figured out that was the problem and the diaphragm 'froze' in the up position, effectively collapsing her left lung. That was one of the reasons she kept failing extubation. So they went in and did a plication of the left hemi-diaphragm --- essentially sewing her diaphragm in the 'down' position. This allowed her lung to reinflate, but unfortunately meant the diaphragm would no longer work on the left side. It was certainly the lesser of 2 evils. Fast forward now to 2005. On a CXR in Feb 05, you could count 10 ribs before the rest were obscured by the diaphragm. On the CXR in Dec 05, you could count 8 ribs before the rest were obscured. That essentially means the diaphragm has come 'untied' -- which happens. So now the diaphragm is back frozen in the up position and her left lung is partially collapsed again. I have noticed a different breathing pattern for her during the day, which was a tip off to me. It also *could* (but not necessarily) explain her low SATs while sleeping. So the big dilemma we're facing is -- "Now what?" Leave it be, and worry about using only 1/2 a lung, possibly leaving her open to even more (than the 14 she has already had) pneumonias? The lung tissue will be damaged if it is left as is. But the surgery last time involved a 12 inch incision and popping 2 ribs apart to get to the diaphragm. It was an EXTREMELY painful recovery for her, involving lots of morphine drip and Fentynl patches. Fix it now, or wait until the July scoliosis surgery? Can she even wait that long? Should we wait? A LOT of questions, few answers. We go back to see the pulm docs Jan 6th and then I am asking for a surgical consult to see if this can be done laproscopically (with hopefully less pain than the last time.) So while you can see that Erinne is not "sick" she still has many challenges going on behind the scenes. Please keep her in your prayers -- and throw in a couple for me too, that I make the right decisions for her. On a more positive note, we have just 80 days until we fly to Georgia to get Erinne's service dog!! We will stay in Georgia for 2 weeks of training with Canine Assistants (www.canineassistants.com) and then fly back with Erinne's new best friend! We are both very excited! (Unfortunately, Kevin will not be going with us.) We don't know the dog's name yet, but we do know it will be a retriever or a lab or a combination of both. The first day and a half there Erinne will work with 15 or so dogs. The trainers will be watching for a spark between Erinne and a specific dog. Erinne will list her top 3 choices and the trainers will have their top 3 and hopefully, they will agree on a dog. By the end of the second day Erinne will know who her new partner will be! The dog will go back to the hotel with us and then Erinne and the dog will begin their new relationship together. I am looking forward to writing more about that incredible journey. We fly out on March 19th, 2006. That's it for now -- God Bless!
Erinne is finally over her bug and is back to school. She had 2 small infiltrates in her lungs which were found on x-ray. All things considered, this was one of her 'milder' pneumonias (is there such a thing?) She is happy to be back with her school friends. I'm happy that she bounced back as quickly as she did!
Erinne's been home sick this week, fighting a chest cold. She's requiring the support of her cough machine every 5-7 minutes and I've had to increase her bi-pap pressures to try and get her oxygen levels up to an acceptable level when she is sleeping. (Oxygen levels ("SATs") are within the low end of the normal range while awake.) She's kept a great attitude through all of this -- little fighter that she is. I am a bit more concerned tonight though because her oxygen levels are very low. Prayers would be much appreciated!
Welcome to Erinne's Journal! This is the first official entry. My very wonderful, kind and caring friend, Laura Stants, has graciously set up this entire website for Erinne. (We love you, Laura!) I had initially planned to set up a journal prior to heading off to Georgia on March 19, 2006 for her Canine Assistants training. But because we have met so many wonderful people recently (ESPECIALLY those at Sam's Club in Flint, MI and at Milk-Bone/Kraft Foods) who want to keep in contact with Erinne, I decided to get this in place now. Thanks for stopping by! Let us know you visited by signing Erinne's guestbook! Hugs, Suzanne