Today, another long day at the U

We reported promptly at 9:30, hoping to get labs under our belt before our 10:00 appointment with T’s nephrologist. hahaha.

I asked if we had ALL the lab reqs, from renal and GI, and the nurse didn’t think so. Happily, our COC nurse had stopped by for a visit and she ran off to take care of that for me. 🙂  We headed over to the lab, and waited for a while, when our nurse found us to see if we wanted to go ahead and do the cath urine catch first. Sure, why not? (his cathed catch from last time came back with odd things growing in it again, things that are generally considered to be contaminants, so we decided to do another one and make double extra certain that everything was absolutely sterile. To this end, we didn’t use lidocaine (numbing gel). Poor Teddybear.)

So, while that horror was taking place, we got the lab reqs all straightened out. After a quick visit with nephrology, we headed over to the lab again. Waited, waited, waited. Finally it was our turn, but oh, wait – the lab couldn’t figure out the orders. I am not kidding you when I say that we waited for a total of about an hour in the lab. The male lab guy recognized me from last time when I totally lost it on him and kept apologizing for the wait and I felt terrible that I had gotten so grumpy with them last time. (honestly, I didn’t yell or anything, I just wasn’t polite.) (I was, you might say, a “cranky pants.” :-p  )

The teenage looking phlebotomist got him on one poke. Awesome.

Ran over to our appt with GI. GI doctor says “I thought we were going to try to get labs early enough that we’d have the results before your appointment…” Yeah, well, it’s not for want of trying, buddy.  He said to just come back in an hour and he or someone else would stop by quick between other procedures they had scheduled that afternoon. (Despite the somewhat snarky comments about the timing of the labs, I actually have liked Dr. Hanna so far.) I did have him look at Teddy’s Gtube stoma, which is red and irritated looking these days, and Teddy pulls at it and cries. He looked at it a bit and then asked how recently we’ve changed sizes on the tube. Um… never. Yeah, see when he asked that, it suddenly occurred to me that Teddy’s had that since he was 3 months old and, um, well, it’s never crossed my mind that he might change sizes. Evidently there’s some nifty Gtube Length Sizing Device, and they used it and got us a new tube that will hopefully fit him better. 🙂 THAT was the good news of the day.

So, we putzed around for an hourish, then came back, and waited in a room for another hour. Which was fine, Teddy was asleep in the carrier and I started reading Howl’s Moving Castle (yeah, it’s a book!) on my Kindle app on my phone.

Then the day kind of fell to crap after that. Dr. Hanna led with the good news – Teddy’s PTH is coming down. That’s great news. I was sincerely worried that it’d just continue to climb, but we’ve finally beaten in back into submission.

And his liver enzymes are higher. I don’t know how much higher, but evidently somewhere around the same place they were when they cancelled the transplant – ish.

Sigh.

And his sodium’s down STILL even after increasing his sodium chloride last time, so we’re increasing again, but we’re HOPING that it’s just that he’s not getting his whole dose (vomiting, or because I mix it with his feeds, maybe he’s not getting it all)… otherwise, his kidneys are just showing us that they’re continuing to worsen while we F around with his liver. They’re feeling jealous that the liver’s getting all the attention.

GI ordered more labs, so off to the lab we went again, and this time it didn’t go well at all. First, I had had to wake T up to get his tube resized, and he was already pretty grumpy with me over that. He was also extremely tired. And then the teenage looking lab girl could NOT find a vein. Two diggy pokes, and she sent us to nursing, who did get it, but he was just a ball of screaming misery, and frankly, I wasn’t in much better shape. A mom at the checkout kept trying to strike up a conversation with me and I just kept getting closer and closer to bawling right in front of her. She probably thought I was super rude, but it was a rough day. And T could NOT settle down for the trip home. He’d nod off for a few minutes, and then it was like he remembered all over again how unhappy he was. Eventually, he fell asleep holding my hand – no mean feat when he’s rear-facing in a tall convertible carseat and I’m driving, lol.

So, we’re scheduled at this time for a liver biopsy on Friday. We’ll go in Thursday afternoon, and then stick around for a day after the procedure. Evidently there’s a risk of bleeding and they like to keep adorable little boys in the hospital for 24 hours after a liver biopsy just to be certain they’re ok. I’ve actually packed a suitcase for just 3 days. And then I’m also taking my usual 7 day stay suitcase and am leaving it in the car. Because I know better than to actually count on things going how they’re supposed to. 🙂  If I’m prepared, I won’t need it.

(True story, this is one of the extremely few times I’ve gone to Iowa City without a suitcase, and they were actually considering just admitting us today. ha. That’s what I get for not bringing my suitcase!! That said, I still brought my laptop and my knitting. I can go without clean underwear, but I must have my knitting.)

Hopefully, the biopsy will give us some answers. It might not.

And then the whole team’ll discuss options again, and I believe that basically the field is wide open right now as far as options go. I’m more than a little scared at this point.

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3 thoughts on “Today, another long day at the U

  1. How can I not think the best for you?!!! Your writing is so true & frank & laid out there — no messing around, tell it like it is, you would SO get along well with my future daughter-in-law!! I sincerely send you good wishes from my heart!

  2. Sweet girl…..there are no words to type that could relieve any form of burden from your full shoulders!!!! But know, you are not alone, and we pray for everyone involved. Here’s to that tube relieving some of your precious little one’s discomfort! God’s Speed Liver!!!!!

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