Our Teddy Bear's Journey

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

Transplant Team… and if you’d like to be considered as a donor

on December 18, 2012

So… today was our big day meeting the transplant team.

We started with the transplant coordinator doing some basic transplant education, which wasn’t really anything I didn’t already know, and I think the same goes for Randy.

Labs, Xray (seriously, glow in the dark kid, right here) – it was all new Xray people this time and one asked if he’d ever had an xray before. hahahahaha.

Then we met one of the transplant surgeons. Liked him. As always seems to be the case with surgeons, he had a completely different version of reality than anyone else. And I think our experiences with Pitcher might have soured me a wee bit on surgeons, but I’m sure they’re fine.

Then he had an EKG.

Then we talked with Dr. Brophy (head of peds nephrology and transplant, who we’ve known since just over a year ago) a bit.

Then we met with the social worker.*

 

Things we learned:

They plan (at least at this time) to remove his native kidneys and ureters (called a nephrectomy) at the time of transplant. Otherwise, they’ll probably just muck things up. I was really happy to hear this. His native ureters are REALLY screwed up and I was kind of sweating the whole “are we going to have to repair those first and how” thing. Evidently, when you have high output like Teddy does, the native kidneys can just confuse everything and it’s just simpler in the long run to take them out. (And a good friend online’s kid, who is very similar to Teddy but just older, had his native kidneys left in and has had to have them removed after transplant and it’s been kind of a hassle… and I’d rather avoid that.) We were told originally that they’d probably be left in (I mean, like, a year ago).

They don’t use a steroid protocol, generally speaking. He’ll be on prednisone in the hospital, but will wean off before discharge. yay. That was another big thing that made me happy. A toddler on steroids just doesn’t sound like fun. In addition, I was on prednisone as a teenager and wouldn’t really wish it on anyone. So, yay.

I’m going to take the list of medicines he’ll be on to our pharmacist and get her started on determining if we need a prior authorization for any of them so we can get that started if needed.

He’s got a boatload more labs that need to be done, but since we want to leave enough blood in him to let him continue to live, we’re spreading them out over several lab visits. I’m going to start stacking on one or two to our every other week (is that biweekly? or semi weekly?) local labs visits, and we’ll do one or two when we’re in Iowa City each time, too. And they’re going to send us a tissue typing “box” from the VA (yeah, I’m not sure) to take to the local lab, as well.

The transplant team meets every Monday to discuss things. They’ll discuss each of the “in the works” patients and each person gets to say their piece – absolutely not, definitely yes, or “I want him to do x test before I comment” type of stuff. The sucky thing is that, because of holidays, they might not meet again until January, the lazy bums. I mean, ultimately, I don’t think this is necessarily a HUGE deal, because he still has to grow more, so it’s not like we’re just waiting on them at this point. We’ve got some time. He’s gotten more stable.** But, still, it would set my heart at ease to hear “everyone said Yes and he’s good to go.”

 

We also have donor packets. If you are wanting to be tested as a potential donor, please let me know. You must be blood type O, and you need to know this first. If you have type O, I’d suggest you read this. Think about it long and hard. I absolutely DO NOT expect anyone to give him a kidney. Seriously. I’ll still love you. Randy and I each have reasons we’ll probably be ruled out as potential donors, but are going to proceed with matching for the time being. I’m just not placing my hopes there. So, anyway, I have a few packets for potential donors. You start by filling out a form with your health history and then if you pass that hurdle, they do some tissue matching, then if you pass that hurdle, there’s a crapton of OTHER tests, mostly to make sure that donating won’t be harmful to YOUR health. Before you even put pen to paper on the health form, you can’t be obese, you can’t be on BP meds, you need to be in generally good health, you can’t be diabetic.

 

** (yes, convention would be to put the single * first, but I think this one is more interesting)  At our local labs 2 weeks ago, Teddy’s BUN was REALLY high. 80s ish. And that’s bad. I mean, there’s a cutoff point after which the high BUN can start causing damage (around 100).  We cut out his extra protein and hoped he’d keep growing. (BUN is a byproduct of protein breakdown) And then he didn’t grow a single tenth of a kilogram for 6 days and I was sweating bullets over it, so I started giving him about a T of coconut oil every day. And kaboom, he started growing again, so that made me happy. And his labs on Friday were EXCELLENT. Mostly everything is starting to settle down again to where we like it.

*The social worker (our THIRD social worker this year) was really nice, but kind of expected a soul-bearing conversation when we had literally just met. Hi, sorry, you have to read my blog to get that. lol. That’s sort of true, though. I’m just not going to spill my worries and concerns and “things that are so difficult to discuss that we often just don’t mention them, like death” with a total stranger. (yes, evidently, countless strangers – I say countless only because I actually haven’t checked my stats on this blog in the last 6 monthsish – on this blog is totally ok, though.) When we told her that I cope with stress by, among other things, doing a lot of research, she suggested it was because women tend to feel that if we learn a lot about something we can prevent bad things from happening. Um, ok, well, not so much…  I like to avoid surprises, I like to have time to think things through in advance if possible, and I also keep up on current research so that I can be an active and contributing member of our health care team. I don’t think that education is a form of voodoo. But whatever. She was generally very nice and I anticipate not finding her to be irritating. She just needs to avoid recommending that I do yoga or participate in other bizarre forms of squeezing more than 24 hours worth of work into a 24 hour day and we’ll get along just fine. 🙂

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