Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

This Week’s Clinic Visit

on August 17, 2013

So we went from Outpatient Surgery to the Peds Speciality Clinic. We were able to draw labs from his IV, which was awesome. He still, you know, freaked out because she was holding his foot, but it was so much better than having to get poked.

I wish I could really adequately describe his anxiety and dislike of people touching him or restraining him in any fashion.

Then the transplant surgeons met us for our weekly Incision Torture Session. This week, they snipped off the granulation tissue that was growing out of some of the wider sections of his incision, which I think was quite painful for him. And it bled a lot. But it does look a LOT better. They talked about how it is not going to be a very pretty scar at this point. Whatever. I snorted and said, well, take a gander at the rest of his torso, it’ll fit right in. (Though surgeons have always said that his other scars look really nice, I personally think a scar is a scar. Then they asked what a few of them were from and I have actually FORGOTTEN some of them. Then I said I have pictures that I’ve labeled so I can keep track and then they looked at me with that look I’m getting somewhat accustomed to – that “wow, you’re an odd one” look. But whatever.)

The incision is not as green any more, which is great. I can go back to once daily dressing changes (I was at three times a day for a while, and his skin was getting REALLY raw).

His labs looked ok. His phosphorous is out of the danger zone (it had been dangerously low), his sodium is looking ok (a little low), his hemoglobin is normalizing (still quite low, but, again, not dangerously so), but his creatining (which is a marker of kidney function) is creeping up.

ugh.

It’s .5 (which is funny to me to be on this side of transplant and see .5 as HIGH, because it’s been as high as 4.something, and normally hung out in the 3’s).  0.3 is normal, and evidently 0.5 is about as high as they’ll tolerate without investigating.

Immunosuppression drugs are funny things. They’re nephrotoxic, which means that they actually cause harm to the kidney, while they’re protecting it. If the drug level gets too high, it can cause the creatinine to go up. (Rejection can also cause the creatinine to go up.) We’ve been having trouble maintaining adequate Prograf (one of the immunosuppression drugs) levels in Teddy, and have increased his dose significantly, so we were kind of hoping that maybe we overshot his Prograf level (meaning, we increased his dose too much, and his Prograf level would have been way too high), but it came back at 9.8. His target is 10.

So… I’m trying not to worry about it while we wait for labs on Monday.

He’s been pretty hypertensive, so we increased his blood pressure meds. He’s been pooping up a storm, and his phos was OK, so we decreased his phos dose (which can cause diarrhea), and hopefully that helps. I’m still suspicious of the Cellcept (another immunosuppressant), but we’ll see.

.

I’ll admit, I’m ready for that kidney to really kick into gear. They said it could take a few months, and I’m trying to wait patiently.

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Thursday was also Scary Talk Day, but I’m not in the mood to dwell on that, so I’ll save it for another day.

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