Our Teddy Bear's Journey

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

Clinic Visit

We had a GREAT clinic visit today. I didn’t even have my suitcase in the car and I didn’t bring my Just In Case bag of supplies. 🙂

We started off by popping into the clinic quick an hour before our appointment to get a Prograf level drawn. (Prograf is one of his immune suppression drugs, and it must be drawn when his next dose is due, which is at 9.) Our plan was: quick labs, then playground until appointment check-in time.  How it worked out: Hit lab at 9:10, exit lab at 10:10. Not kidding. And the phlebotomist today was NOT super skilled at finding Teddy’s veins. And his third poke, after we switched arms, he screamed like we’d just cut his arm off, so that was fun. 😦 He’s usually so good for labs with his super favorite phlebotomist here in town, with some protesting but not much… so I think it was not so much him but more her.

We discussed…

– Teddy’s labs, which are stellar. 🙂 Except his Prograf, which was really high for some reason when we did labs last week at home. (which is why we were doing them again today.) Today, after a dose reduction, the level was even higher. Yay us. So we’re reducing a smidge more. Dr. Z has learned from experience with T that if you reduce his Prograf dose what seems to be a reasonable amount, his level tends to plummet, so we’re inching down by .1 mL at a time. 🙂

– Blood pressure. Not stellar. We had tried reducing his dose of BP meds about 2 months ago, and it became apparent immediately that THAT was not going to work. (In theory, working kidney should mean his BP will eventually be normal without meds, but nothing is guaranteed.) We increased back up to not quite his old dose, but now we think that not only was that just not enough, but that he’s actually even outgrown his old higher dose. End result: now he’s on an even higher dose.

– Weight: He’s still gaining and at an OK rate, so we’re not messing with diet at all. Height, he’s also growing. 35 inches today. That’s 8th percentile for height. Last time I looked him up, he wasn’t even on the chart, so this is a huge change. 🙂

– Growths. He has this thing on his leg. But it doesn’t look like a wart, doesn’t look like Molluscum, so it might just be… a bump of skin on his leg. It hasn’t changed in any way since I first noticed it 3 months ago. But now he’s got what looks to everyone to be a wart on his foot. We’ve got a pediatrician appt in 2 weeks and we’ll get her opinion and probably have her remove it. Before you message me about duct tape or home treatment or leaving it alone, warts are viral and can be very very hard to get rid of in transplant patients. It is better, generally, to take action early than to risk it spreading. And when I say spreading, I mean… really really spreading.

– Sleep and why Teddy doesn’t. Nephrologist doesn’t think it’s related to his meds and might just be his wiring. Ultimately, it doesn’t matter, we’re not changing his meds. Life experience of other transplant moms suggests that at least some of might be related to the high prograf level. (His sleep’s been bad since his transplant, but markedly worse in the last week or two.)

– Headaches. Teddy bangs his head, which he’s always done, but it had gotten much better and now it’s worse again. This might also be related to the high prograf. And makes sense, because his banging was worst when his prograf level was at its highest right after transplant. I think he gets headaches, and he bangs his head (either on a hard surface, or with his hands) to help it feel better.

– Diarrhea and vomiting. Again, both had gotten better and now both are worse. God only knows why. I’m so sick of this topic of conversation, and yet it’s probably the one thing I discuss the most often, ever. I bet I’ve talked more about diarrhea in the last year than any other single subject. I tried putting him back on the reflux meds, and we went from 2-3 vomits a day to 3-4 a week, so that’s an improvement. We’ll see. Otherwise I’m at a loss and can’t decide if I want to get back on GI to figure something out, or just drop it and fall back on trying to wish it all away.

– Vaccines. My favorite subject. He’s a year post transplant now, so he needs to get the very few shots he’s behind on. Did the DTAP today and will hit the other one (Hep A I think) in 2 weeks with the ped. Then he’s good until he’s 4, I guess. They think I’m funny because I know literally nothing about the schedule even though he’s my third. Not that the “recommend schedule” matters to me, lol. I’m clearly going to follow my own plan anyway.

– bicarb. We finally get to reduce the bicarb a bit and see how it goes!!

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