G-tube

(written by Brenda, my caregiver)

Tuesday, December 10, 2002

Hi all: So we are home. We got home yesterday around 6pm. To recap our week: Thursday: Left home at 8am and got 5 miles from the hospital before the weather got bad. The last 5 miles took almost 2 hours....due to ice, snow, and people who can't drive!!!! We arrived at the hospital at 11am, just in time to miss the scheduled Upper GI test. Our room in PICU was taken due to trauma cases so MJ was admitted onto the SICU floor. That was traumatic for everyone, nurses included. MJ didn't really like the atmosphere and the nurses weren't sure what to do with a verbal, moving, young patient!!!! LOL!!! Anyway, we had the upper GI at 2pm....only 1 episode of reflux at the end of the test, no hiatal hernia, but it showed esophageal regurgitation (as she swallows, the food goes up and down in her esophagus before hitting her stomach). Pediatric surgery residents had to come down to start the IV that night (at midnight). Friday: Surgery was moved back to 2pm. MJ got a "Santi Bath" before surgery!! What an experience. Her nurse, Santi, gives bed baths a new meaning!!! Because mattresses in SICU and MJ's are waterproof, he uses the suction machine and water to give a bed bath, shampoo included!!!! Dump the water on MJ and suction it up!!!! LOL!!!! We just got done with a Santi Bath when the called for MJ at 11:30. MJ and I went in at 11:45am and they started the peg procedure at noon. It was hard on MJ. The tube was fairly large, she hated how they inserted it, the throat spray made her not swallow her saliva, and they couldn't find the needle to connect the peg to the outside! After an hour, and lots of versed, Dr. Bethel made the decision to intubate and do an open gastrostomy. After almost 2 hours, they were done and MJ was extubated right on the OR table. Because no beds were available, she was readmitted to SICU. She was started on a morphine PCA pump. She looked horrible after surgery, because they did a blind intubation and she got a bloody nose, that drained out her mouth. Anytime she coughed, it was all bloody! YUCK! That night, she did eat a few ice chips and a couple sips of apple juice. We could not use the nasal mask because we couldn't vent the tube yet, so her sats were all over the place. Her heart rate was all over too, usually 130 and above. Saturday: MJ was very sleepy and lethargic and wasn't holding her sats well. The discontinued the continuous morphine pump around noon to a just as needed morphine. Right after that, and a few more ice chips, MJ threw up all the apple juice from the day before. She was given an IV dose of reglan, and given another santi bath!!! Pain wise, she was doing good. The amount of blood coughed up lessened and was dried up. Laura Landre came to visit around 8pm and Tim went to the waiting room to visit and watch her kids. While Laura was there, the orders came through for transfer. At 11pm, they were finally ready to move up to PICU. Once we got there, her IV infaltrated and they had to start a new one. GRRR!! We had a great nurse from neonatal start it and she did great. Finally got to sleep around 1am. Sunday: Woke up and wanted to flush the GTube, because while being vented, the tube collected bile and stomach acids, but were told that they gave orders for the tube to be clamped. MJ was to "eat" orally all day and on a liquid diet! Well, surprise to us. MJ did get some juice down, ice chips, and italian ice, and sherbert ice cream.....That night they wouldn't let us drain to vent so we rigged up the syringe venting tube to let her breath!!! MJ slept pretty good. We decided not to get the phone because we assumed that we would be out Monday. Monday: Bethel's resident came in and was upset that MJ was clamped the day before and asked why!! Duh, it was someone from your team, not our decision. At 5pm, they finally found something to do a feed with so MJ got 2oz of tolerex twice that evening. She also at a 1/4 of a pancake, 2 bites of grits, drank a tad of tea, and some apple juice. She is still on her IV and morphine as needed, but hasn't needed any since early Sunday morning. Helen started working on discharge equipment, but insurance problems delayed our discharge. MJ has thrush in her mouth and a yeast infection under her arms, on her back and legs. Started on nystatin. Tuesday: Totally nonproductive day. No doc came because they discharged MJ yesterday, but no one informed us. Nurse came in at noon and asked when we were leaving, they were waiting for us to say we were ready to go home. Helen came back up and it was decided we would quick get things set up so we could come home. Finally, with Lou's help, we were discharged officially, at 4:45pm. We made it home by 6pm. MJ was glad to see Wyatt. Wednesday: MJ had a rough night. After we got home last night, MJ started coughing a lot (actually she coughed whenever she at yesterday). She coughed all night. This morning, her phelgm, was white frothy stuff, so she has yeast in her lungs again! :o( MJ wouldn't use the tylenol with codeine at all and is doing great. She was running a low temp tonite and is desatting some, but after all the coughing we did, it is not surprising. Oh, regarding the gtube.....we used it some yesterday....she got about 12 oz through gtube during 4 bolus feedings. Today we did a slow drip, of 20 oz through the afternoon....once we started that, her coughing lessened and she was able to eat half a baked potato. We are going to do a slow drip again tomorrow and work up to 2 packs a day. MJ loves being able to do stuff and eat at the same time. Well, I think that is it for now. TTYL. Thanks again for all your prayers.
 

Pneumonia

Friday, February 21, 2003 7:21 PM CST

Hi everyone:

Sorry so long in the updates. Last Friday, MJ was supposed to get a PICC line inserted, but no one in the county would do it since she has contractures in her elbows. We went to the pediatrician and couldn't get an IV started. After a phone call to Dr. Bach, we quickly came home, loaded thevan, and headed to Newark. We were "supposed" to get a PICC line inserted, stay overnight, and head home. Well, we just got home tonite. Since it was Friday and Valentine's day, and a holiday weekend, no one was available to start a picc line....so after almost 3 hrs in the ER, they got a regular IV started in MJ's wrist. We were admitted to PICU Friday night and she was given levaquin antibiotic via gtube. Saturday, we were just hanging around waiting so Tim came home. Saturday's levaquin made MJ sick. She threw up three times (through her tube, which amazed the docs and nurses there). The vomiting made her stomach spasm causing severe pain...the resident didn't believe MJ at first and after a few hours I yelled at him and MJ was given ativan via heplock. She loved that as it made her sleep really well but raised her heart rate to the 150's. Sunday's dose was decided that she would be given Maalox first (4 hrs. prior) then reglan 30 min before, then the antibiotic. Well, about an
hour later, it all came back out. After three times of vomiting, they gave her karafate....a maalox type drug...which did nothing but was given Zofran (?) which did help. Monday, MJ decided that she would rather get the drugs through the iv instead of a mix of two different ones through gtube. The line blew and the resident was able to start a line. Of course, the antibiotic, Levaquin, was still so powerful, that it still upset her stomach, so feeds had to be stopped. Zofran stopped the cramping again. Tuesday was a bad day. The levaquin made MJ really nauseaous that we didn't get any food into her. Thankfully, she had her IV line to get fluids in. The antibiotics caused severe pain that Tuesday night, MJ was in horrible pain. They gave MJ ativan and some other drug that totally knocked her out. Unfortunately, it knocked her out completely...she had to be awoken to breathe. The meds
stopped her from breathing and her sats dropped into the 70's and her respiration rate dropped to zero or 2 per minute. She was basically only responsive to pain, so I had to poke her foot to get her to breathe. She was like this from 7pm until 3am....Tim and I stayed awake to keep her breathing. Wednesday, they called in a GI doc, who said to start slow with feeds on Thursday but to go slowly starting at 20cc an hour and working up slowly. We also started MJ on Mylicon drops to help with the cramping and that worked. MJ slept most of the day away but did wake for a visit from Auntie Laura Marie. Yesterday, they started at 20 cc an hour for 2 hrs and worked up to 40cc after 2 hours. They then wanted to go to 80 right away but we refused. We convinced them to let us stay at 60 and do feeds throughout the night and send us home. We arrived home last night around 5pm. MJ was glad to
be home and Wyatt was excited to see her. MJ is still very tired and worn out. The three days without tolerex really sapped her energy level, so she will have to sleep lots to gain her strength back. She is also on her vent non stop for now. Hopefully, she will be able to get back to her baseline soon and start to enjoy 9th grade and springtime. Sorry there were no updates, but we didn't have computer access. Thanks for keeping MJ in your prayers.

10th grade was more of the same, minus the frequent hospitalizations. I got a bit depressed from missing so much school but I, thankfully, got over it. I started on a lot of new meds, including Tobi. Tobi has been a godsend and I am SO glad that it has kept me out of the hospital
 

GJ-tube - 1st Try

(written by Brenda, my caregiver)

Saturday, March 29, 2003 7:28 AM CST

Hi all:

We got home Friday afternoon around 5pm. It was an eventful trip that is for sure. We are glad to be home.
We were supposed to be at Newark at 11am but I said we would probably be closer to noon. Well, we didn't get there till 1:30 which was a good thing as our room wasn't ready. We finally got upstairs to PICU around 3pm. MJ got checked in and settled pretty quickly. The hospital is redoing their grounds and there is now NO handicap parking. We did find help and Tim got a parking permit for the student parking lot so we didn't have to worry about parking. We had big plans to watch My Big Fat Greek Wedding Wednesday night but of course, with MJ, there is no easy! All of a sudden the TV lost sound. We had no sound at all....either with TV or VCR. So we "watched" shows on TV all night. They did get an IV started fairly easy (2nd try).
Thursday: They started IV fluids at 4am when they stopped feeds. MJ was scheduled to have her procedure at noon, being downstairs at 11:30. We got down at noon and they said they weren't ready so we headed back up. It stressed MJ out compeletly....we had to wait for 90 minutes!! MJ was a mess by the time we headed down again. Tim and I went in with her until she was out. Tim is upset at the anesthesiologist. We talked about intubating through the nose as it was easier to do. They both agreed but the guy ended up intubating MJ through the mouth. They finally got her intubated on the 3rd try, after putting her up on rolls under her shoulders with her head tipped backwards. Besides the ET tube, they also had the endoscope in her mouth. MJ's mouth is very sore and she is coughing up blood. She has several sores in her mouth and throat. The procedure itself went really well. The doc was pleased with how far she was able to get the tube down. We hope it will stay there for 6 months. MJ was awake and angry at them before they extubated. They wanted to wait but she glared at them until they extubated her. She had trouble maintaining sats for transport...she was 90 to 92 on 7 liters of oxygen. Once we got MJ on her vent after coughing a lot, she did great. She was coughing up blood frequently. Her throat was very sore and wouldn't swallow her secretions...so she had a nice rash on her neck from drooling. She ate some ice but didn't swallow. We had a long night suctioning her but she did fairly well. Feeds were started at 9pm at 15 cc per hour and to be raised 5cc after 3 hours.
Feeding wise, today, MJ was up to 50cc at 3pm so they let us go home. She is able to swallow now, but she is very sore. She is still coughing up some fresh blood but not surprising. The ride home was very tiring for her, so she has been resting and coughing lots.
Hopefully this will help MJ get better. She hasn't had any reflux but she hasn't been eating orally at all or getting much yet.

GJ-tube - 2nd Try

Sunday, May 18, 2003 6:30 PM CDT

Hello, we are home!!!!

Didn't think it was possible, but we were out at 4pm today. Amazing!!!!!! We got to Newark at 3:30 and our room was ready. (Yes, we did go drop off MJ's English paper that was due Friday and the teacher told MJ to have a good day, almost like having fun when she said she couldn't be in class cuz she was going to the hospital...idiot!!!!). Friday night was uneventful. Good PICU Resident who got the IV on second stick with no problem. The nurses fought over who got MJ. LOL. Dr. Patel met us in the morning and said she would be intubating through the nose since it was so easy in December. They said 30 to 45 min and she would be all done. 90 min later, I went hunting them down. Finally found Dr. Montiero. MJ was still in the operating room (long story there) and was intubated and probably would be till morning. They weren't able to do nasally ..... MJ's epiglottis is really damaged...it is enlarged and extremely floppy. It had really deteriorated since December. GRR. Anyway, surgery was over at 11:45 and MJ finally got to her room at 2pm. MJ woke up at 3:30 and was probably swearing a blue streak but we couldn't hear her and probably glad we couldn't!!!! LOL!!!! After I told her to shut up and go to sleep that she was going to be intubated till morning, she did fine. She was just shocked at waking up and being intubated in her mouth and still being intubated. When Me-Me called, MJ's sats were approaching 70 and going down. MJ was brought up to PICU on 80 percent O2 and Dr. Joe weaned her down to 21 quickly but made her crash from the drop to 21. Got the percussor and cough assist adaptor and suction and we were set. MJ got her needs know by using sign language. I taught MJ how to finger spell and she would let us know clearly what she wanted. Anyway, when MeMe called, MJ was at 72 and going down. I was suctioning MJ and needed to keep coughing MJ and Tim was stressed. I was yelling at him because he didn't understand the concept of "sterile field". I don't know how many times I had to keep starting over!!! LOL!!! So, anyway, after we got MJ back up using 100percent O2, they started weaning again, but more slower. She had a great night. Slept great but couldn't lay on either side, only her back. This morning at 9am Dr. Joe tested MJ and she was able to support herself without the vent and by 11am, she was extubated with no problem. Her sats never went below 94 the whole day today!!!!! We started food back up at noon and at 3:30, Dr. Joe said go home so we were out by 4!!!!!
Regarding the tube: it had never migrated! The Jportion had 2 tears in it due to the bend to insert into the jejunum. Not exciting...but the feeds were leaking into the stomach from there. Chances are it will happen again. Dr. Montiero said she isn't recommending MJ have it done again. Since intubation is more difficult, each time will get harder and harder for both and so, this isn't a future option. We talked about getting a Nissan and a J port and keeping the G port left there too. The only way left to accomplish all goals that would be the simplest. Well, sorry if this rambles, i'm getting tired. TTYL!!!!
 

J-tube and Nissen

(written by Brenda, my caregiver)

Sunday, July 13, 2003 11:13 PM CDT

Hi everyone:

We have been home for about 6 days and MJ is doing great. She came home on 60cc/hr for her feedings and this morning is up to 100cc/hr. She is still nauseous at times and at night her incision is quite painful because she is laying down. She is still taking her Reglan and Nexium. While in the hospital, her body was trying to reflux but wouldn't because of the Nissan, but she was still having the mechanics of it. With the Nexium all that is gone!!!! Her incision is completely healed and has only one stitch that is trying to come out. We have to change the pads around the J tube twice a day because of drainage but it looks pretty good.
Since MJ is doing so well, we are going to go to the lake house Tuesday afternoon. MJ's dad is on vacation till the 20th, so we are going up Tuesday and probably won't be back till the 30th. We know we will be home next Monday for the doctor and to do laundry and check email, but will be at the lake house (no computer access there). Other than that, all is pretty good here. MJ is feeling really good and has lots of energy. The TPN in the hospital really helped her as her hair and fingernails grew quickly and she actually gained strength in her legs and head. Now, while laying in bed, she can turn her head a bit from side to side!!!! Woo hoo!!We hope that this surgery is the last in a long time and MJ can go back to enjoy being a teenager!!!!! TTYL!!!!

Wednesday, July 9, 2003 11:13PM

Hi everyone:

Where does one start after almost 2 weeks in the hospital.

Thursday, June 26th
We arrived at the hospital on time but ran into insurance snaffoo's. Aetna decided that a J tube placement and nissen was an outpatient procedure and MJ didn't need to be admitted at all. After finally calling United, we were admitted. MJ had her favorite nurse to check her in, who still remembers everything, so that was easy...plus we take index cards with all med information, previous hospital info, vent settings on it and hand one set to the nurse and one set to the docs, so questions are answered right away without having to repeat oneself. We were told that an IV would be started at midnight but we requested one earlier. Thank goodness!!!!!!!! They started right after dinner (from IHOP). The PICU resident tried 3 times (top of hand) and whenever they got near the vein, it was blow. So, they called in a NICU nurse who tried 3 more times (one on each forearm, and once in her hand) and that blew each time. Next resident came and tried a vein between MJ's knuckles...it blew, then got a vein on the outside of MJ's left thumb and drew blood and then it blew. So she got an IV started on the outside of MJ's right thumb. We were done at 1am! UGH!!! MJ was a trooper during it all. I was doing relaxation techniques with her to calm her down and she would come up with some crazy comebacks that kept everyone laughing. Uneventful night as the nurses left us alone!!!!

Friday, June 27th
Surgery was scheduled at 2 but they had a cancellation so we were taken down at 11am. In pre-op, Dr. Patel gave MJ an nebulizer treatment to help numb her throat and versid, which she LOVES!!! After she got it, MJ said, "I really like that drug!!!" Helped get rid of pre-op jitters. Bethel came in and she told him what she wanted. The plan is to leave the G-Tube for meds and venting air (one of leading causes of nissen failure is air in belly), get the nissen (stomach wrap to prevent reflux of orally eaten foods), and have a J tube inserted (into jejunum for tube feeds). MJ told Bethel that she wants to be intubated after surgery for overnight so coughing would be easier (she told them all that if she wakes up and glares at them to just ignore her). She also requested to have a catheter (after she fell asleep) so she wouldn't have to be changed and moved around a lot. Her other requests were a morphine pump for pain and Finding Nemo characters for her bandaid (she took a picture of 8 characters from Finding Nemo so Bethel would know what she wanted). At 11:45 we went into surgery to get situated. MJ was given more versid (which she really loved at this point). I showed them the IV site and warned them that it would probably blow so find something better! At noon, I left and surgery began. At 4pm, she was back up in PICU.....mad!!! They inserted an NG tube that was hooked up to suction to drain her stomach.....she was not happy about that at all. Pain control was a major issue as Patel and Bethel wanted her drugged the first night but Sinquee didn't want to, so MJ was in major pain while they tried to find the right dose. MJ was signing to Sinquee, "Why don't you believe me that I'm in pain!!! Do you think I'm joking or making it up?" Sinquee got upset (oh well) and they finally hooked up the morphine pump!!! The night was uneventful. MJ's lungs were clear and coughing brought up NOTHING!!!!!

Saturday, June 28th
After a chest X-Ray at 6am, Dr. Nevado came by at 8 and asked MJ if she wanted to be extubated and put on her vent. MJ said NO, because of the NG tube, she couldn't use her mask. Nevado laughed at her and said that it would be taken out too, so MJ said yes, please extubate!!!! We tried coughing again and still nothing. The only concern while intubated was her CO2 level. Duh!!! They were concerned that it never went above 28 (35 to 45 is normal). We assured Nevado and Sinquee that for MJ that was high. They tried adjusting vent setting but it wouldn't budge, so she was extubated early. We had to use 1 Liter of oxygen as her sats went to 90 and just sat there. So, one liter was bled through the vent and her sats were 96 and above.
Oh, MJ got a central line for IV fluids and meds so that was great. We requested TPN to be given so MJ was getting total nutrition through the IV. Sinquee said no problem and she would write the orders. She didn't and either did a resident, so TPN wasn't ordered. Otherwise, she did good. Wasn't talking much but signed her needs and wants. She sucked on ice chips but suctioned out the water so she didn't have to swallow. Urine output was down to 10 cc per hour despite 100 cc IV, so she received 2L of saline in an hour. Finally, they decided she was dehydrated before surgery (we told them that) and started 140 cc per hour via IV. MJ started to spill ketones, so hopefully we can get TPN started.

Sunday, July 29th
TPN was finally started this afternoon after major fights with the surgery resident and PICU resident. They told us the risk of infection was too high to risk and losing muscle mass wouldn't occur. Jill came up from dietary and helped get it started. Jill was great. She is finally understanding more and more about SMA and fasting issues. She talked to us about risk vs muscle loss ans short term use. Unfortunately, MJ has a fever of 102. Not sure what is up. We think major atelectasis as her secretions are very thick and sticky! Pottasium was low and so was Vitamin K. MJ is getting a Vitamin K shot daily for 3 days. Pottasium was given via IV flush. Hopefully, the TPN will regulate that.

Monday, July 30th
J tube feeds were held off due to the fever. They don't want to run the risk of starting while she has a fever. She is now getting albuterol treatments every 4 hours with saline treatments in between...so breathing treatments every 2 hours. Long day!!!!!!!! Temp got to 102.6. Urine samples were taken before the catheter was removed. MJ did sit up further in bed and did ok with it. Not much else happened.

Tuesday, July 1st
Temp is down to 101. Chest Xray was same, no changes....so just atelectasis. If temp goes down, feedings will start tomorrow. MJ did throw up today via Gtube and Jtube. Both were draining to gravity but nothing was coming out...so I opened the container and stuff just poured out. Mostly was bile, but got over 150 cc via Gtube and 90 via J tube. Still NPO but sucking on ice chips to help keep her throat moist. Using her vent 24 hrs a day still!

Wednesday, July 2nd
Temp is down to 100 or so. Tolerex started at 4pm at 10 cc/hr. At 11pm, MJ wanted to open the Gtube due to air in her belly and about 70cc came out that looked a lot like Tolerex. Hmmm. We just ignored it and kept feeding. Around 3 am, MJ wanted to vent again, nothing came, so we flushed the G with 5 cc of water and 30 came out that looked like Tolerex. MJ was very nauseaus so feeds were stopped. Urine tests came back positive for enterococcus bacteria. While I was in the restroom the idiot day nurse came in with catheter kit and was going to cath MJ who by now was screaming. I told her to leave and get the doc that ordered the test who I made justify the test. They got a urine sample but not by cathing.

Thursday, July 3rd
Doctors were mad that we stopped feeding, but MJ feeling nauseaus was just not worth it. We were sent down for gastric study test again....with barium. I had to be obnoxious to get everyone to listen. While starting to transfer, we rolled MJ who started gasping. I tried to roll her back over telling every one to wait but was ignored. Finally had to scream to stop. MJ then said she couldn't breathe. DUH!!! The test showed barium moving the correct direction, so we were done. Unfortunately, MJ was on the hard table for 90 minutes....causing her tail bone to hurt and legs to go numb. She was crying while her idiot nurse kept assuring her she was having an anxiety attack. I finally told her to leave and not to tell MJ what she was feeling. She was in pain and not anxious about laying on the table. MJ passed out from exhaustion when we finally got back upstairs. Docs came in again and needed another urine sample...forgot to send the culture one down. DUHHHH!!!! What a stressful day. Feeds were started again late afternoon at 10cc per hour along with Reglan at our request. Of course, despite the test being normal, the feeds came back up and out the G tube. Sharon, night nurse, (who was our favorite when MJ had spinal fusion in 1997) took one look at it and said tolerex. Docs said throw it away and keep feeding. We did.....but by 3am, MJ was so sick, Sharon said just stop it.

Friday, July 4th
Docs were mad that we stopped feeds again and mad that we didn't save the drainage. They asked, they said NO! MJ joked that they wanted to use it on their evening barbeques. Food was off for the day, but the docs said MJ could have soft food if wanted. Dr. Sinquee ordered Reglan to be increased to 10 mg, 4 times a day. MJ was sitting up in her wheelchair for 2 hours when the first dose was give. (Before surgery, the 10mg dose made MJ sick). 10 min after the dose, MJ threw up via gtube. Tim got MJ a baked potate (she had been craving one for the past few days. She did great with it until the next dose of Reglan came...you guessed it......threw up. No more reglan was given!

Saturday, July 5th Surgery resident was angry at Sinquee for increasing reglan dose. lowered it back to 5mg like before and we started MJ on 10cc of Pedialyte per hour via J tube since her belly was very loud. MJ tolerated Pedialyte all afternoon and evening with no loss out the Gtube. YEAH!!!! A step in the right direction!!!!!! Evening time went to 20cc/hr of Pedialyte....MJ got nauseus and was given Zofran and it helped and we stayed at 20cc.

Sunday, July 6th
MJ tolerated 20cc all night with no loss out the Gtube. At 5pm, MJ was switched over to 20cc of Tolerex. She did great!!!!!! No problems. Urine culture came back the same and they were going to start antibiotics but Sinqueen said NO! They wanted to see if MJ ran symptoms before starting. MJ also started to come off vent for longer periods off time, using mouthpiece more during the day and breathing on her own at other times.

Monday, July 7th
Switched to 40cc/hr of Tolerex. The bandage was taken off, so her Nemo characters were gone. The incision looks great!! It is completely healed already!!!! Saw Bethel and told him how great it looks. The plan is to increase to 60cc at 11pm. Also talked with infectious disease because the urine culture test came back Vanco resistant. They agreed that MJ needed to be treated right away. MJ was started on antibiotics at 6pm. The plan is, if MJ tolerates 60cc all night and tolerates the antibiotic we can go home in the morning. MJ had trouble with the midnight dose and 6am dose of antibiotics. She is getting 20cc of antibiotic via J tube along with the 10cc to flush plus the 60 cc per hour and started to feel sick. We figured it out at 6am and stopped feeds for 20 min after antibiotic to help her adjust.

Tuesday, July 8th
Saw surgery resident at 7am. Said we are cleared to go home!!!! Started packing and getting ready. But had to wait and wait and wait. Sinquee didn't start rounds till 10am, then had to wait till they were finished before they would remove the central line....then wait to write orders. When they finally did, they pretty much picked up everything in our room and put it in the hallway and said hurry up we need the room!!! By that time, I was a little perturbed. We sat there waiting all day. Kate, head nurse was trying to hurry us along all day, when we had nothing to do with it!!! Plus she had been glaring at us previously, like we wanted to stay in PICU that long. Finally at 12:30 we were ready to go. As we were leaving Kate was all nice, but I let her have it. She said, Oh leaving so soon! I replied shortly, yeah, you pretty much kicked us out. I also let her know what I thought of their fill in idiot nurses (another story in itself) and shoving us out of the room and so on and shut her up quickly. Said I was glad we were going home because at this point I couldn't stand her crap any longer!!!! Said goodbye and walked out without waiting for their assistance in going downstairs!!!! We arrived home by 2:30 after stopping and getting Tylenol with Codeine, Zofran, and Neurofurantoin. MJ did great!!!!

Wednesday, July 9th
MJ slept in until almost 10am. No disruptions or interruptions. I have to get up at midnight and 6am to do antibiotics. It was good to be home. MJ stayed in bed all day just relaxing. We did get a shower in today. Tomorrow we are off for first follow up with Dr. Proskin.

Thanks again for all your support and prayers during this time. They sure have helped make a difference. TTYL!!!

PS New pics will be added tomorrow (Note: click here for pictures)....one of Nemo bandages and a couple from the hospital!