Our Teddy Bear's Journey

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

Today’s Clinic Visit

on June 17, 2013

So.

UIHC does NOT excel at coordinating visits with multiple specialties. They do good at the scheduling part (though nobody seems to actually show up for their appointments on time – and I’m talking about the doctors). But not the actual coordinating. As in, “Teddy is seeing three specialists today. Each one is going to want labs.  Let’s get the lab orders from each doctor before sending him to the lab.”  Or as in, “Teddy is seeing three specialists today. Even though one of the specialists normally sees patients on the LEFT side of the clinic, since Teddy’s already in a room on the RIGHT side of the clinic, maybe we could walk those extra 50 steps and come to HIM instead of making his mom pack up everything that’s gotten unpacked over the last 3 hours and haul the backpack, feeding pump, blood pressure machine, box of toys from Child Life, and Grumpy Teddy and move to a new room.”

It was just kind of irritating the first few times we saw more than one specialty, but it’s just beyond frustrating now. They really ought to be able to do better than this.

 

Alright, so today. Labs. Before we head to the lab, I check: Teddy’s seeing three doctors today, do we have the reqs from each of the three doctors? Yes. And he needs a urine bag (it’s a bag that sticks to your nether regions to catch pee). Fine. Affix bag. Head to lab. No line, my favorite new phlebotomist (the teenage looking one) got him on the first poke, no digging. It was awesome.

GI was first – his liver enzymes were back up a bit, just staying in the general range where they’ve been, bouncing around, but clearly not trending down. Went over the results of the biopsy with me again. Explained that this Glycogen Storage Disease that is the current Guess Of The Week could cause them to need to handle Teddy’s care post-transplant differently, which is why it’s important to know whether it is or isn’t that in advance of the transplant. Fine. I sort of believe that. I mean, the child has survived his previous 12 surgeries and the biopsy (which itself resulted in 14 hours NPO) without issues, so I don’t know why this would be any different, but whatever. I’ve kind of stopped asking these questions because I really never get answers and I’m too tired to press it. Ultimately, it doesn’t make a difference, anyway.

Transplant coordinator had said she’d have someone from Transplant come talk to me. Nobody from transplant came. I wasn’t surprised.

Teddy’s nephrologist was next. His labs are looking OK. PTH back up a bit. Changed some meds around. Chatted a bit. She mentioned the possibility of sending his slides off to a peds liver specialist at another hospital for another opinion, since UIHC doesn’t have an actual liver specialist (explaining why we see GI for this, something that’s never made a LOT of sense to me).  Also discussed her Plan B for Teddy, which is that if he becomes unstable again (which is, unfortunately, just a matter of time), we’ll give PD another try. Unfortunately, Dr Pitcher would need to do that surgery. If it comes down to that, we’re going to have a Let’s Clarify Everything meeting with me, Pitcher, and nephrology to go over exactly what we all expect as far as catheter placement, type, etc., and honestly – I think I’ll also insist that one of the nephrologists is in the OR during the operation. That’s a dealbreaker for me. So we’re lodging that plan in the back of our heads and hoping we don’t have to use it.

Meanwhile, Teddy’s DONE. He’s sick of being held, he’s tired of the carrier, he doesn’t want to sit on the table, he doesn’t want to play with the trains, he doesn’t want to draw with the chalk, he doesn’t want any of our toys, he doesn’t want the ipod, he’s yelling and screeching and hitting and being a typical 2ish year old, because he’s an overachiever in that regard. You know, behind with the gross motor skills, but advanced in the temper tantrum department.

An hour or so later, we changed rooms so that Genetics could see us an hour after our scheduled appointment time. And, turns out, there was “a miscommunication” and NONE of the labs Genetics wanted were completed.

So, the genetics doctor measured Teddy with calipers all over and said stuff like “wide spaced nipples” and “tapered fingers” and fancy pants words describing every aspect of his physical form. This part felt icky. I wanted to say, “Hey! You’re talking about my precious adorable little boy here, people!!”

He seemed to think he would get away with saying “we’re going to be doing a variety of tests” without really explaining any more. I gave him Introduction To Dealing With Sarah Reid 101, which included endless repetitions of “what does that mean,” “why,” and “so what will that tell us?” Sadly, because Teddy was still largely throwing a fit, I didn’t take written notes, and because we were going on Hour Five of our visit, I didn’t manage to retain a lot of what he said.

Essentially, they’re going to be looking for *something* that could be an over-arching cause for the kidney failure AND the liver damage and maybe some of his other bits and pieces.

He doesn’t have anything *obvious.* It’s not anything “common.” It could be a chromosome deletion or duplication, but he doesn’t think so since Teddy’s normal appearing.

He’s going to be getting a buttload of labs, and also some urine tests. We started the labs today (second lab trip today), but were unable to get them all drawn (there’s a limit to how much blood you can take out of a person, and we were at our limit). No more draws for a week for him. And, because everyone farted around for so long before getting the (second) urine bag on him, we never did get a urine sample, so I’ll have to do that one next week. (We hung around literally another 2 hours waiting to see if he’d pee again.)

He’s also going ot have to see an opthamologist and have some sort of bone xray assessment that involves lots of xrays of every part of his skeleton, because the kid doesn’t have enough problems, we’re going to try to give him cancer, too.

The shitty news that made me want to excuse myself to go have a good cry: These labs will take at least a month. And we haven’t gotten them all started yet.

At least a month to get results, that will probably only tell them if they need to look further into particular things.

Sigh.

Realistically, we’re looking at fall before we can do the transplant. 😦

 

What pisses me off is that they KNEW they’d want these labs based solely off of reading his file and scheduling the appointment – seeing him in person didn’t affect the labs they wanted. WHY could we not have started working on these labs 2 weeks ago, at the time the appointment was scheduled?? Hm??? It’s like nobody else cares about getting his transplant rescheduled except me. Grr.

 

So that was today.

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4 responses to “Today’s Clinic Visit

  1. Momma Aimee says:

    Sarah i really think you need to write all this out — like why the labs were not requested 2 weeks ago– and politely bring it to the attention of management. i think these people forget teddy is a real little kid and has a real life and a real family. he is not just a file; delays like this matter. i am so sorry. i know pushing the transplant out just gives him more and more time to be unstable again

  2. Michelle Bales says:

    You are my hero!!!!! To have such restraint verbally…..Prayers you and Teddy’s way!

  3. Jamie Burdorf says:

    I can’t even comprehend what FALL would mean for Teddy who is just walking this tight rope without any type of dialysis. I’m confused, as an outsider, about the involvement of genetics. They came when we were in the NICU and it does feel very intrusive. It’s hard when you feel like just another case and they don’t realize how important this is to YOU. Because this is YOUR LIFE and YOUR CHILD!! I hope they get their crap together to get that little boy of yours that kidney.

  4. sarahtar says:

    I both do and don’t get the Genetics involvement. Because this Glycogen Storage Disease is a genetic thing, and they found something on the biopsy that might indicate that this could be the issue (though in the absence of ANY OTHER symptoms), they want to look into that. Genetics also is interested (more from a clinical standpoint, I believe, than because they care) in whether ALL of his issues might have a global cause – and I’m on board with that, if there’s something to discover that will lead us in the right direction to provide him better care – if there’s something more than just His Kidneys Were Physically Damaged In Utero Because Your Luck Sucks Too Bad For You – it would be good to know. Nobody has yet to really fully explain why this is important NOW and why it’s important to determine this NOW and hold up the transplant over it. Coordinator just answers me with “I don’t know,” and the transplant nephrologist and surgeon both seem content with letting GI play Telephone for them.

    Genetics floated “if something points to needing a liver transplant, too, maybe he just does both at the same time” but unless they’re running some sort of BOGO special at the U, I’m not really on board with thinking that a liver transplant is something that he needs *now* even if it turns out he has something that will necessitate a liver transplant some day. And I really think that comment from the Geneticist was just one of those things that doctors say when they’re talking out their a**. I really don’t honestly think anyone’s thnking liver transplant (any more, anyway – when autoimmune hepatitis was the Guess Of The Week, it was mentioned more than once).

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