December 2007 - 3 Years, 1 month
December 27, 2007 - The last couple of days, Jenna is doing better, a little better yesterday and a little more today! She was off her bipap most of the day except for respiratory treatments and nap. That is an improvement all in itself. She still has a lot of what we think is nasal congestion, but her sats are generally good.
December 23, 2007 - Jenna is home! She is still pretty sick and needs total bedside care, but we figured they weren't doing anything more at the hospital than what we do at home so it was time to go before she catches anything else. She still requires bipap and can only take a break of 1 1/2 hours at a time. She still has A LOT of junk to get out and we are constantly suctioning, coughing, nebs, etc. Tonight she is running a low grade fever of 100.3 and her heart rate is slightly higher than it was yesterday. Even though she is still sick and requires a lot of work, it is so nice that she is home and we can all be together again.
December 18, 2007 - @ 8:30 pm - Yep,
Jenna was positive for RSV! And C-Diff too! Nice, huh? You go into the hospital
to fix one problem and you come back with two more! Thank God she had her
two synagis shots already this year. The insurance company originally denied us
and we had to fight for it. I don't know how she would have made it out of it
without the shots. She is definitely on the down slope which is good, because I
was really, really scared that she might not get thru it the other day. We have
been weaning the 02 over night and she should be off sometime today. Her tummy
is much softer and I guess we'll wait until rounds to see if we are going to
attempt the feeds.
December 18, 2007 @ 11:35 am - Jenna had a real tough day yesterday. It was weird, the morning seemed better than the day before, but then by afternoon not so good. She had extreme tachycardia with a heart rate of 180s, when sort of sleeping, it was in the 160s. She was laboring and it took every ounce of energy she had to breathe, to a point she was shaking the bed. This is with her bipap on and 3 liters of o2. She spiked 104 temp and they ordered another chest xray and one of the abdomen as she was also so distended. This xray wasn't as nice as the prior one. It showed atelectasis and they are saying a possible pneumonia as we await respiratory cultures. The abdomen xray showed an ileius (paralysis) of the bowel so feeds have been stopped again and she was put back on TPN for nutrition. We are doing aggressive respiratory treatments and we will repeat both xrays tomorrow morning. Today, she is a little more comfortable with a heart rate of 150s.
Prayers going out to all the other sick kiddos right now! Get better soon!
Thanks MJ, for keeping our website up to date. We really appreciate it!
December 16, 2007 @ 10:45am - Good news is Jenna's xray looks good, no pneumonia or anything. Bad news is she is still having problems. Her heart rate is 170s-180s and all she does is cry. I ended up talking the docs into giving her chlorahydrate (sp?) as she had this before without incidents. We have been giving her around the clock pain meds and that doesn't help. She does not have a fever and she is acting like she is just too tired to keep her breathing/sats up. She is still on bipap, 5 liters o2 and her sats are 90-91. Paul arranged for the girls to be with family and made it up here. Because of the snow, I am having a hard time reaching an outside line for my laptop, but right now I am in the "family room" which has a PC, while Paul is with Jenna. I will try to update when I can.
December 15, 2007 @ 7:30pm -
Jenna started labored breathing this afternoon and
was very irritable, high heart rate 150-160. Her RR was jumping due to her
tugging to breathe. We ended up doing an Albuterol neb, CPT and starting the
cough assist at 20/20. Afterward, she started flowing and it was nonstop
suctioning. She continued to be irritable/constant crying and labored
breathing, HR now 170-185 and sat fluctuating 93-97 and respiratory rate jumping
due to her laboring. We ended up coughing again at 30/30 after touching
base with Dr. Swoboda. We really didn't get any more junk up and she
continued with the irritability/crying. The fellow in the PICU thinks it is due
to pain. The resident said to give her Morphine, which concern us as we all know
it can depress her respirations. We started with a low dose (1/3 dose for
her body weight). It has calmed her down and she is sleeping - HR 150, RR
40, o2 93%. She has briefly awoken with some whining, but then drifts back
off. We are waiting to hear back from Dr. Swoboda on if there are any more recommendations. Please continue to keep Jenna in your thoughts and prayers.
December 15, 2007 @ 12:30pm - It is 12:30 east coast time and Jenna is doing fine. Satting around 96 to 97 all night and this morning. She has been good without the cough assist until now. We are 3 days out now from surgery so we are going to start coughing her at 20/20 this afternoon and get her off bi-pap for small stretches at a time. It is amazing how touchy a t and a surgery could be for our kids, but the plan for her so far has worked.
December 14, 2007 @ 8:45 pm - This afternoon Jenna started satting in the low 90s on bipap. You can hear the junk that needs to be coughed out, but unfortunately, we shouldn't because of her surgery. Dr. Swoboda suggests waiting 2-3 days before using the Cough Assist as it can cause bleeding and we certainly don't want that. On the other hand, we don't want the junk sitting in her lungs and causing a possible pneumonia either. So we tried some albuterol and at first it seemed to make her more junking as it breaks up the stuff in the lungs. After we continued with CPT and light suctioning (can't go down the nose or too far back in the mouth due to bleeding), she eventually went back up to the higher 90's. Right now she is hanging out around 95 which is fine. My hopes is that she stays around here or higher so we don't have to break out the Cough Assist and risk bleeding. If she can just hold off until tomorrow afternoon, it will be best.
December 14, 2007 @ 11:25 am - Well, it has been a long week! Jenna had her tonsillectomy and adenoidectomy on Wednesday. They had trouble intubating her because her mouth doesn't open very well, but they used a special tube and got it in. She did very well with surgery. She was finally extubated last night after a long day. She had some bladder and bowel issues that needed to be resolved and after stopping the Fentynal, she really didn't want to wake up. She was extubated to continual bipap with 4 liters of o2, but is doing so much better this morning. o2 is down to 1 liter and her sats are staying 95%-98%, which is great. I am sure she will be off the o2 very soon. We are still unable to cough her so we are working on Chest PT, suctioning, and postural drainage. It looks like we will be there all weekend and our guess is for discharge on Monday. Thank you for all the thoughts and prayers!
December 10, 2007 - First of all I would like to say "Thank You" to everyone for putting the benefit together, those who donated, and all who attended! We had a great turnout and appreciate everyone's support. It truly meant a lot to our family. Thanks again!
November 2007 - 3 YEARS OLD!!
November 19, 2007- Jenna saw the ENT today. He said her tonsils and adenoids definitely need to come out. He is looking to get this done soon, after coordinating with pulmonology and anesthesia. We gave him the proper SMA protocols for nutrition and pre and post op care. Paul talked to the Pulmo today and he is going to follow-up with the pediatrician on these protocols as well seeing she may be admitted under them. The ENT did tell us that there is a possibility that she be intubated for a couple days if there is a lot of swelling. At least we know that up front and don't find out when/if it happens. Recovery time is about 2 weeks. This is pretty scary as any surgery for SMA kids is a big deal. Please keep Jenna in your thoughts and prayers as we work toward and get thru surgery.
November 15, 2007 - All in all, Jenna is doing fine. Her tonsils are still swollen, her throat is sore, and she has a little bit of a stuffy nose, but other than that she is fine. She has an appointment with the ENT on Monday, so I guess we'll see how things go. We also have an appointment tomorrow with the Orthotist. We are looking into getting new AFO's (well DAFOs) as her heels keep popping out of her current ones. We are also looking into knee splints has her hamstrings are now contracted. The TLSO vest is working great. She actually "likes" to wear it! We also have a rep from EyeGaze coming this weekend. I can't wait to see how things go. This is a communication device that Jenna can activate by using just her eyes! Next week we are looking into the Quick Glance system, which is a similar device. Busy, busy, busy!
Many prayers going out to all of the sick kiddos and of course to Grandma Gullo, who is in the hospital. We love you Grandma!
November 8, 2007 - Jenna had a wonderful birthday party on Sunday. She had a Barbie theme and just loved all the stuff that went along: goody bags, tattoos, etc. She even had the chance to "taste" her birthday cake. It didn't go so well, but she was thrilled! Even now if you ask her if she had a nice birthday, she says "cake!" So cute.
November 2, 2007 - Happy 3rd Birthday Babydoll! Today is your birthday and we wish you all the love, joy and happiness for your special day! We are so proud of you, all that you have accomplished and gained in the past three years. It is amazing how you continue to beat the odds, and although you are so weak from your disease, you are oh so strong in so many ways. We love you babydoll ~ Happy Birthday!
October 2007 - 2 years, 11 months
October 16, 2007 - Wow, it has been a long week! I guess I will start from the beginning...
October 6, 2007 - Jenna is doing much better. She was on an antibiotic for 5 days and is really doing so much better. I had her nurse look in her throat today and her tonsils have gone down since Tuesday too. She said she can still see them, but they definitely have gone down.
October 1, 2007 - Please add Jenna to your prayer list! I had to take her to an appointment today in Rochester to meet the physician who will be doing her sleep study. She fell asleep in her EasyS on the way home and must have aspirated (yes, she was laying flat on her back). Her pulse ox was going off so we pulled over on the side of the thruway and did a few rounds of cough assist and suction. I couldn't get her stable so I put her bipap on. She was satting around 96-97 so we were off again trying to get home. She started desating again on the way, so we had get off the thruway and pull into a truck stop. Another few round of cough assist and suctioning, I was able to stabilize her to 95-97 on bipap again and we made it the rest of the way home. Since being home, she started a high heart rate, temp, and high respiratory rate. She sounds like she has junk in her front lobe and I called the pulmonologist. She is on antibiotics now and on bipap. RR is better, but still having some peaks and dips. As of right now (with the help of Motrin), her temp is down too. Her HR is still a little elevated, but that is to be expected. We would appreciate it if you could keep her in your thoughts.
September 2007 - 2 years, 10 months
September 20, 2007 - Sorry I haven't updated in a while and I can't believe September is half over already. It has been a pretty busy month. We went on vacation in August to Sherkston and the kids had a great time. Jenna loved meeting Bradley Bear and his friends. Then we had the crunch of preparing for the start of the school year.
August 2007 - 2 years, 9 months
August 10, 2007 - Jenna is still not feeling well, although today seems a little better than yesterday. Two nights ago she ended up refluxing her meds (give by GT) and we think she aspirated. Thank God Mya was near her as she noticed right away and we were able to turn her to the side and help get it out of her mouth. It was definitely the medicine Paul had just given her. We think she aspirated some as her temperature went up and and her sats kept dropping that night. We started respiratory treatments every 4 hours. Ms. Chris, one of Jenna's nurses, heard some junk in her back lobe so she is now on an antibiotic. Maybe that's why today is a little better than yesterday.
Today is Jenna diagnosis anniversary. Two years today we were told our little girl had SMA. No treatment, no cure. What a terrible day. Today is also my birthday. It's funny, most people in their 30s get depressed on their birthday as they are "yet another year older". Not me, I could care less about the age. It's just depressing that Jenna has SMA and has to fight so hard to live.
August is SMA Awareness month and the second Saturday, which is tomorrow, is the 4th Annual Candle Lighting for SMA Angels. Please light a candle at dusk and let it burn brightly in honor of those precious little ones who have gone on before us and those who continue to fight and live with SMA.
August 8, 2007 - Jenna isn't feeling well. She started with a few extra secretions and a couple bad nights of sleep. She woke up this morning with a cold. She sounds nasally too. So far it doesn't sound like it is in her chest, but her sats are averaging 96. Some would say that is ok, but not for Jenna. She usually runs 99-100. I am not sucking too much out of her nose though either, which makes me think there is more to come. And the poor thing is miserable! I ended up canceling her therapies today.
On a lighter note, this past Saturday, we had our 4th Annual SMArt Walk for A Cure. It was a beautiful day and we had a great turnout. Official numbers aren't in yet, but we raised over $50,000! We also had Katie Cooper and Tiffany Fogle from Kaydence.org come to visit. They brought the SMA Angel Wings Awareness Quilt, which is beautiful! Thanks for coming and a big thank you to everyone for your support!!
July 2007 - 2 years, 8 months
July 23, 2007 - Jenna is doing fine. She is sleeping better, so that is good! I talked to Brian Weaver at Bach's and he helped me with the settings and such. We have to slowly go up on her IPAP as she has never been able to tolerate anything over 15. Maybe it has something to do with her other settings, maybe not. I guess we'll see.
One thing though, she cannot seem to handle much calcium. It is giving her heavy secretions and sounds all junky. Sometimes her sats drop because she can't handle them. So we backed off of it. We have tried this twice with the prescription (1250mg). When she didn't handle it the first time, we cut the dose in half and split that up to twice a day. She seemed to get junky again. So we went back to the 250 mg tablet we use to use before seeing the Endo. Unfortunately, this stinks because of her osteopenia.
July 16, 2007 - Jenna is doing fairly well. We have been trying to increase her calcium, but we keep running into issues. The first time was a high dose, gave her stomach issues and now I realize it gives her extra secretions as well. We went off the high dose prescription Calcium Carbonate and now she is back on but we dropped the dose in half. The secretions started again. We are taking her off and I am going to give her the capsules of Calcium Citrate again, just a higher dose. Hopefully her secretions will go down in another day or so.
Jenna is doing excellent in her power chair. She has definitely shown improvement over the last couple weeks. I will have to get a video clip of her and post it. Yesterday, she drove all the way down the drive way and over to the neighbor's! Then she wanted to see the dog two doors down, so once again, down the driveway and off she went! It won't be long until she is zooming all over the place!
Prayers going out for Kyle, little Daniel at Primary, Achdon, and any other little ones under the weather!
July 8, 2007 - Well we figured out what Jenna's extra secretions were all about. She has gotten so big over the last couple months that she outgrew her Robinul dose! At first we thought maybe it was her allergies, but increasing the dose of Zyrtec didn't work. Then, unfortunately, she had an episode at her cousin's birthday party where her sats dropped into the 60's. We were able to get her back up to 99-100 after coughing and suctioning (quite a few times). She wasn't sick, she was just pooling her secretions again. It reminded us of the dreadful Nebraska disaster. Same thing. Once we cleaned her out, it was like nothing ever happened! We increased her Robinul and everyday she seems to be doing better.
June 2007 - 2 years 7 months
June 28, 2007 - Wow! June is just about over and I haven't updated yet! It has just been a crazy, but good, month. Lots going on with the girls and end-of-school-year stuff. They both received excellent report cards and I am very proud of them!
All in all, Jenna is doing good. She has some extra secretions the past week so we will keep an eye on that. She is just growing like a weed! She is SO tall and is in the 90% for height! Big girl!
We went to the FSMA Conference in Chicago last week. It was great. We are so happy we went and looking forward to going again next year. At least next year will be the East Coast, a little closer anyway. The girls were all good, no issues, no problems. They actually had a lot of fun. All three enjoyed the pool, the kids room, crafts, and carnival. Mya & Kali and a few friends did some fundraising for FSMA while we were there. They made bracelets and neckties in the kids room and sold them to parents. They raised almost $200! How impressive!
We finally received our van back from being modified. It is going to be real nice to transport Jenna in her chair. Now to start thinking about home modifications.
Oh, we also got Jenna's hand splints and AFO's this month too. We are actually going to the Orthotist tomorrow for a TLSO vest.
Well, hopefully next month I will be able to update a little more. Just wanted to make sure we at least had an update for the month of June : ) !
May 2007 - 2 years, 6 months
April 2007 - 2 years, 5 months
Also, yesterday was Mya's birthday, HAPPY BIRTHDAY MYA!! She turned the big 8. Can't believe it has been 8 years. Wow has time gone by! We went to dinner then Dave & Buster's for fun & games. The girls had a great time.
Just want to wish all the sick kiddos out there get well wishes and hugs! And you, Mr. Kyle, I'm watching you! I know how you and Jenna like to stick together when sick! Get well soon buddy!
April 24, 2007 - All in all, Jenna is doing well. Her respiratory issues are under control and doing great. She still is refluxing a bit at night and lately she isn't sleeping well. We have another GI appointment on Friday, so we'll see what happens then.
Today is another sad day. Little Miss Kalair earned her angel wings this morning. Kalair was 7 years old with Type 1. My thoughts and prayers are with Liz and family!
April 8, 2007 - First of all I would like to wish everyone a Happy Easter. I can say that now as we are home from the hospital! Jenna has been making progress everyday and we talked the ICU docs into discharging us to home yesterday afternoon. They wanted to watch her for at least one more day, but she was satting 95% off bipap awake (lower when sleeping and on bipap) and the only thing they could do for us that we couldn't do at home was an xray. And for being discharged to a floor, was out of the question! So.. we ended up coming home! This was the worst sickness Jenna has ever had. It was very difficult to see her go through this and we are just so thankful she is home.
April 5, 2007 - Just came home to get a couple things done and some rest. Paul is with Jenna as she is still in the PICU. She is doing a little better as she is off o2 and she has had a couple breaks off the bipap (1 hour at a time) and maintaining 95% while awake. She is having issues with lying on either side now even with bipap on as her sats drop (anywhere from 73-89%). The respiratory culture came back negative and they are calling it a cold. She now has a partial collapse of one of the upper lobes, can't remember which one. She is thick. It is clear and white, but extremely thick. You could pretty much just suction her continuously. Respiratory treatments are still the same. We are slightly drugging her to calm her down and get some sleep as she is pretty miserable and just cries. The drugs worked well and she was sleeping and maintaining 91-95% when I left. I am trying to remain positive as she is a little better than yesterday, I just hate to see her like this.
April 3, 2007 - Well Jenna was admitted to the PICU yesterday. She was dx on Sunday at Urgent Care with early bronchitis and given an antibiotic. We were able to control everything up until yesterday early afternoon. Her sats kept falling and hovering 91-93% while on bipap. We did treatments every 2 hours with Albuterol nebs every 4. We were constantly suctioning and had to keep her in postural drainage. After a little while, even that wasn't keeping her sats up. So we surrendered and started o2. Even on that, her sats continued to dip into the 80s and were bouncing all over the place. We arrived at the ER and almost immediately admitted into the PICU. She just couldn't keep her sats up with 3 liters of o2. Unfortunately, we still don't quite know what is going on. Her chest x-rays continue to look "ok", no pneumonia, no major plugs, just some secretions. They collected a respiratory culture this morning to check for RSV (and yes, she has been getting her shots each month). It may be viral. For the first time, we heard the talk about intubation and trachs. This was very scary. Of course we immediately paged Dr. Swoboda. We wanted to make sure we knew what to look for etc. Jenna's pulmo is pretty good and follows Dr. Schroth, but we still wanted to "be prepared" as it was the PICU physician talking and not him. As of right now she is not intubated. They raised her o2 and she has been working real hard with that and continuous bipap. Her Respiratory Rate has been jumping all over the place. Normally, she runs about 22-25 awake, and she is jumping from 17 to 65 to 30 to 26 to 69, etc and she cannot sleep. She has not slept since waking Monday morning (and neither have I). She cries a lot, cannot suck her thumb due to positioning and an IV line. We have tried to place an IV in several different places to make her more comfortable, but we run into the same ol' problem of collapsing veins. She would be able to lay on her left side and relax sucking that thumb, but she cannot maintain sats in that position. She drops to the higher 80s even with o2. Nothing really is showing on the x-ray for the left side. After the pulmonologist watched her breathing while laying on her back, he thinks she is just loosing muscle tone on that side and it looks as though she is not taking in as much. They are trying to slowly reduce the o2, but I am not sure how this will go. When we take the bipap off to cough her with o2 bleeding in, she is ok. Once we are done and have to get the bipap back on, she will drop quickly so we need to blow o2 at her just to get it back on again. One good thing is that her co2 is within good range and they continually monitor it. So, I am hoping for the best and trying to hang in there. I feel so bad for her and wish I could just take it all away. Please say an extra prayer for our princess as we all know there is power in prayer!
March 2007 - 2 years, 4 months
My thoughts and prayers are with the Watts family, as little Logan (aka Peanut) earned his angel wings yesterday. My heart goes out to you.
March 5, 2007 - Jenna has been having quite a bit of secretions and over the last couple days they have increased, become thicker, and white. Her heart rate is elevated too. She was having issues with her sats dropping, but we treated her Q4 with Chest PT, Nebulizer, Cough Assist, and suctioning. Today the secretions seem better. Over night we kind of figured out that her heart rate issues seem to be related to the feed. I dropped the rate of her pump today and her heart rate has improved, not totally normal, but much better. Hopefully it is a 24 hour bug and she will be feeling better real soon! Big hugs JJ!
Hugs & Prayers to the other sick kiddos: Lizzy, Malorie, Ava, Colin & Casey, Ryan and any others I may have forgotten to mention! Glad to hear Mr. Kyle is feeling better ☺!
February 2007 - 2 years, 3 months
February 19, 2007 - It has been a pretty busy couple of weeks. Exciting too! We finally received Jenna's power chair! We also found out that Medicaid has approved us for our minivan conversion: side entry with lowered floor! Seeing it was more than the cap amount, it will have to go to Albany for special handling, but it was approved! This is great news! It really is difficult to transport her now. She uses the EZ-On vest, which is great, but getting her chair in and out of the van is another story!
Prayers going out to all the sick children: Lia, Issac, Aschdon, and any others I have missed! My thoughts are with all of you!
February 5, 2007 - All in all, Jenna is doing well. We are still playing around a bit with diet, but I have a feeling it will be a never ending process. She has been pretty healthy, so that is great. We are waiting on her powerchair, which we should have Wednesday, yeah! We put in for van modifications, but haven't heard anything yet.
Happy Birthday to KALI! Her birthday is tomorrow and she turns 6! Big girl now! Plus, she ended up getting glasses a week ago and now she has a loose tooth!! WOW! Lot's going on around here.
I want to send big hugs and prayers to the Postma family! Little Issac is in the hospital and he can use all the extra prayers right now. My thoughts and prayers are with you!
January 2007 - 2 years, 2 months
January 15, 2007 - Please pray for little Alex as he has been in the hospital with pneumonia for the past 7 days! My heart and prayers go out to the family.
Jenna is doing better with her secretions. It turns out that dropping some Vivonex in her diet has helped tremendously. We have been trying to add some foods to make up calories, but it just isn't working. We will most likely have to switch to Tolerex as it is higher in calories. Other than that, things are going fine. We go see the GI doc this week, so that will be interesting.
We received Jenna's "Auntie Jenny Hat" last week. It is just beautiful. If anyone is interested, proceeds go to SMA Support and you can find them at Auntie Jenny Hats.
January 7, 2007 - Good News!! Jenna's power base to her Kid Kart has been approved!! This is great news and now it can finally be ordered! We have only been working on it since May! So it should only be a matter of a few weeks for it to be in! We have been practicing with the loaner and she really isn't doing too bad! We are trying to figure out which side her joystick should be on as her left side is stronger than her right side, even though she is right handed and initiates everything on the right. Whichever one it is, I guess it doesn't really matter.
As for her cold, she seems to be doing better, but she is just having such an awful time with her secretions. We have been giving her Benedryl as it is the only thing that helps. The secretions got better, so I backed off. Well, by the end of the day, she had so many secretions again that her sats started dropping, even while sleeping on bipap. So... we are back to Q6 for the Benedryl. She is cutting her last two molars and part of each tooth has broken the skin. I guess we need to try to figure out if the extra secretions are due to teeth or if she should be put on something to help her manage them. Ever since the Utah/Nebraska disaster in September, Jenna is on and off with being able to control them. She will do well for a bit, then can't handle them (I.e. reclining in her kid kart or just moving her position drops her sats and we have to cough and suction to help her out). She has an appointment coming up with the pulmonologist, so we'll see what happens then.