carebearkidney
Mouseketeer
- Joined
- Jan 25, 2012
- Messages
- 337
Love the Halloween pic! 
His surgery went down without a hitch fortunately! However, he had some complications after surgery as well. He's been on 4 blood pressure medicines since he was 14 months old and finally diagnosed with congestive heart failure due to the toll it was taking on his body. (his blood pressure would run 160/100 on a good day with his 4 meds and 200/120 on a bad day - needless to say, we were in the hospital quite a bit on 'stroke" watch!)
The docs changed up his bp meds to an IV med that just happened to have a very rare side effect of interacting with prograf. Well, if it is rare - it will happen to my son (I'm sure you know the feeling!)
His prograf went through the roof with this trough levels in the 40's! He was delirious and out of his mind. Scratching his skin on his face off, screaming uncontrollably and ripping out his IV's and catheter even. He was only 18 months old. The high levels of prograf did cause prograf toxicity to his kidney, so his creatinine has bumped up more than it would have been. Plus, his pain was only controlled with TYLENOL for the first 15 hours POST surgery. He would hold his breath since he was scared and they said he was having respiratory issues and with morphine of the like, it would only suppress his breathing more! 
Needless to say, I got a patient advocate on that right away! But the damage was done and he developed post traumatic stress disorder due to it. We hit our first rejection episode at 6 months, but have had smooth sailing since. (where's some wood? I'll just use my head!)
How scary about the clotting of his aorta! EEK. I think i would have flipped out had I been told that.
Is he doing well for now?
Meningitis too?! Man these two have a lot in common. His doctors always joke that he's just too much trouble for one name so it's good I gave him two
His surgery went down without a hitch fortunately! However, he had some complications after surgery as well. He's been on 4 blood pressure medicines since he was 14 months old and finally diagnosed with congestive heart failure due to the toll it was taking on his body. (his blood pressure would run 160/100 on a good day with his 4 meds and 200/120 on a bad day - needless to say, we were in the hospital quite a bit on 'stroke" watch!)
The docs changed up his bp meds to an IV med that just happened to have a very rare side effect of interacting with prograf. Well, if it is rare - it will happen to my son (I'm sure you know the feeling!) His prograf went through the roof with this trough levels in the 40's! He was delirious and out of his mind. Scratching his skin on his face off, screaming uncontrollably and ripping out his IV's and catheter even. He was only 18 months old. The high levels of prograf did cause prograf toxicity to his kidney, so his creatinine has bumped up more than it would have been. Plus, his pain was only controlled with TYLENOL for the first 15 hours POST surgery. He would hold his breath since he was scared and they said he was having respiratory issues and with morphine of the like, it would only suppress his breathing more! Needless to say, I got a patient advocate on that right away! But the damage was done and he developed post traumatic stress disorder due to it. We hit our first rejection episode at 6 months, but have had smooth sailing since. (where's some wood? I'll just use my head!)How scary about the clotting of his aorta! EEK. I think i would have flipped out had I been told that.
Is he doing well for now?
Can't wait to read more about it. 
Hi, Wendy mentioned someone was looking for a fish extender. 
I love his curls! Hope you are getting some good ideas from other cruisers for fish extenders. I had NO idea what that was... 
had to look it up. Looks like fun though!
. Someone made paper bag scrapbooks that were really cute!. We also got a CD one day that said Disney favorites....I have to admit I didn't play that for a long time after we were home, then one day I saw it and put it in my car and played it. It has AWESOME fun music that had been remade with Disney words/character names in it ect. or some of them were real songs from Disney movies, but mostly hip hop fun dance music Disney style. I have no idea where they found the songs from but that is now our favorite CD!!! My daughter and I LOVE to listen to it every time we are in the car. It is like remembering Reed's wish trip again and again all the time!! We also got these cute Disney key fob wrist-lets. I made cool neck bandana's (our cruise was in the summer) and put them in pirate bags with pirate candy. Can't think of any more ideas for you yet, but hope that helps get the ball rolling on ideas.
