Back in the hospital and the 'bad' anniversary

[Phyllis Ann Talbot]

Well - first of all - so sorry for taking SOOO long between updates! Things were rocking along and I honestly forgot about it and then was waiting to do one on a couple of good things coming up but apparently Hyde had other plans :-\.

First things first - we are here at Egleston, were admitted yesterday morning, but hoping this will be a very quick stay ;-). Since I haven't updated in a while - here's what sort of led us here. Hyde has been doing really well, and our transplant program tries to transition kids from Prograff (one of the anti-rejection drugs Hyde started on) to Rapamune (a different anti-rejection drug). So without getting too technical - but so you'll kind of know the reasoning - Prograff is a very good anti-rejection drug that's been used for along time that happens to have 2 main drawbacks - 1) it's toxic to the kidney (and yes - Hyde has a kidney transplant - this is why he has blood work so often to make sure the levels of this drug in his system stay exactly where they want it) and 2) it also has a reasonably high malignancy profile, which basically means that it increases Hyde's risk of some cancers later in life. SO Rapamune - is not toxic to the kidney and has a lower/better malignancy profile which is the positives to switching, however - as with anything medical - nothing is straightforward, and rapamune short term has a bout a 30% chance of causing mouth sores ad ulcers. Usually these are like canker or cold sores and go away, however I was very nervous about this since one of our kidney buddy's just had a very bad episode where the ulcers became abcessed and caused huge infection problems.

Anyway - with that as background, Hyde switched medicines about a month ago and then just this week started with a low grade fever, diarrhea, and mouth sores. Thursday night his fever spiked WAY up - over 104, and tylenol would not bring it down - so that's when we paged our transplant team Friday morning and they had us admitted. Hopefully this is just a virus and we are being super careful, but his medicine change shouldn't be causing the fever, etc. SO they are running a bunch of tests just to make sure nothing else is going on. OF course the stinker didn't have a fever yesterday (trying to make me be aliar - but I'll take it!) but is back to low grade this morning - so we'll see what happens. I'll update again once we know anything and/or go home ;-).

Now, on the second topic - this is always a really weird day for me and being in the hospital just makes it more so. January 28, 2008 is the day I consider the beginning of this whole stupid AHUS journey with Hyde. There were a few small things before this but we really fell off a cliff on this day 4 yrs ago and went straight to our 6 mths of almost constant hospitalization, etc. I hate to say this is the day our lives changed for the worse because we have been blessed in SO many ways since then, but it's also impossible to ever say you are happy for all the pain and suffering your child has been through and knowing that they will continue to struggle the rest of their life.

Sorry for the 'downer' - I just always struggle a bit on this date for some reason but the positive is there are MUCH better anniversary's just around the corner and will update on those soon!

Thanks to ALL of you who have been with us for the last 4 years, for the prayers, the kind words and thoughts, meals, taking care of Ruth and the house, just everything. We can never tell you how much we appreciate and remember every single thing that has helped us along this journey. Thank you!

SO for those of you not on facebook, and to let you know the fun/grey hair I'll be getting from Hyde - here's his latest 'funny'. We started a chart at home because it's been a nightmare trying to get the kids to go up and get ready for bed (sure this is only us with this problem?) So if they go up, go to the bathroom, put on jammies, and brush their teeth with no one crying, screaming, or hitting, they get a sticker for the night. If they get 7 stickers in a row and keep their rooms clean they get $1 for the week (yes - I know it's bribery - don't judge ;-). So a few days later Hyde's in the kitchen looking at the chart (with only 1 ay of 2 stickers, a few sporadic ones, and 2 days with sad faces because there are no stickers) and says (this is a direct quote) 'Seriously Mommy, you've seen how Ruth and I act! It's CLEARLY impossible for us to do this for a whole week!'

On that note - wish me LUCK!!!

Bill, Phyllis, Ruth, and Hyde

[Cheryl Biermann]

Just get him and Ruthie and up and down bed!  Seriously, I think Nathan actually misses them, he fondly talks about how well he slept when he was in the hospital all the time.  Mom when you can raise your head a little, without bending your neck and just put your feet up a bit, it's so comfortable.  I have pictures of him in bed, and I have NO idea how that could be comfortable, normally the back is up so are the feet, the bed's like bent in half and he's slid sideways with feet off the bed, head rammed into the rails and arms crunched somewhere beneath him! 

 

I keep meaning to ask about the Rapamune.  Of course we're only going on five months. Not as long as Hyde.

[Linda Burke]

You are too funny....even in the face of all these bumps in the road!  Hope Hyde's symtoms settle and that he's able to go to Rapamune - your background info is extremely valuable to those considering a kidney transplant with supportive Soliris therapy.

...and good luck with the bedtime routine-  Skyler's program centers now on the morning making his bed issue ("Why?  I'm just going to sleep in it again tonight!).  :-}