Sunday, September 16, 2012

A rainy day retreat

I was busy last night (I had promised to help out at a bike race at the track) and Jen took my place for the parental sleepover.  I slept at home, between the very lonely and needy dogs,  The dogs seem very disoriented by the lack of family presence.

I got to the hospital around 9:15am today, and Jen and Jake were both half-asleep.  I think they double-napped, because it's now 12:30pm and Jake is still a bit groggy.

I think we're going home this afternoon. Jake will come back tomorrow (and Wed and Fri) for an IV dose in the morning.  Jake's kidney numbers have stabilized a bit.  They aren't good, but they aren't getting worse.  I think his overall kidney function is at 30%.  You need dialysis when it gets to 15%.  I think his post-transplant numbers were around 45%.  

Saturday, September 15, 2012

Easy Saturday Status

Jake's feeling pretty good right now. He's taken 2 naps already (kind of an indication he's a bit drained) and several of his friends are stopping by this afternoon.  Right now he's putting together some Legos with Flynn.  We may have to formally register his desire at the Lego store, because that's what people bring when they visit.  Luckily, Flynn's a Lego nut too, and he has a mental checklist of what Jake already has.

His blood sugar is high.  We presume that's steroid-related, but he's got to lay off sugar and carbs for a while.  It's an odd situation, because pre-transplant people have to go on a low protein diet.  I asked, and they said that they don't adjust a transplant kid's diet until absolutely necessary. Even though his kidney is currently problematic, its apparently more important for a kid to get the protein.

The current plan is to go home tomorrow and come back Monday-Wednesday-Friday for additional IV servings of solumedrol.  There was some talk of staying over until Monday, but I wanna go home. Jake would probably prefer to stay over, because his primary fear is the needle prick, and he's afraid of the Monday IV needle (as opposed to simply keeping his current IV for an extra day).

Friday, September 14, 2012

What's the emoticon for nervous?

I'm not much of a texter, so I don't know the official symbols.  Jake's initial biopsy results came back, and they aren't particularly encouraging.  These bouts of rejection seem to have caused a good amount of scarring, and it seems to indicate that the long-term span for this kidney may only be a few years (or less).  We've got a big visit planned to St. Louis in two weeks to meet with Jake's lead transplant nephroligist, so this may be the lead topic of discussion.

Jake's hanging out in the room watching TV.  Valerie and Kim Carver stopped by earlier in the afternoon.  He's a little grumpy right now, because he's got a blood sugar test in an hour and he's not supposed to eat and sugar or carbs until that's done.  Once it's done, he can eat all he wants. I brought him some Cholula-flavored beef jerky, which is much tastier than you'd think it would be.  Highly recommended,  With all the prednisone he takes, he's a usually a hungry boy. Last night he sent me out at 11pm to McDonalds (at the other side of the hospital complex) for Chicken Nuggets. I did get him a Power Rangers happy meal, because it was a lot cheaper than buying his requested items individually.  I don't think he's going to treasure the Power Ranger toy, but who knows?

I don't know if it's a symptom or a side effect, but he's really puffy.

It looks like we'll leave the hospital on Sunday.  It's a good thing that Monday is a day off.

Thursday, September 13, 2012

Kidney Rejection II - Electric Boogaloo

We're back in the "hotel" for a few days. Jake's kidney function blood levels are pretty bad (Creatanine 1.4, BUN 43) .  He had a biopsy yesterday, which tested negative for the various bad viruses and such, but positive for organ rejection. Just like the last two times, we're back in the hospital for a three day IV treatment of Solumedrol (in massive 400ml doses).  Presuming that it works, he may be back in next week for every-other-day pediatric ambulatory treatments.

He's a trooper, and isn't afraid of the hospital or the treatment. He's primarily concerned about the lack of ample internet bandwidth.  He's got the iPad, and has hit me up for purchases of "donuts" on the online virtual simpsons game.  I'm used to sleeping on the chair, and have no problem going to work in the morning once Jen comes in to take over.