I left the big kids at home this time and just brought Teddy since we had two appointments and I was afraid the day would be long. As fate would have it, everything was running like clockwork and it was the fastest we’ve been in and out of there in a long time. Ha.
Not much to report on the nephrology side, happily. Teddy gets his viral levels checked every month for Epstein-Barr (EBV), BK virus, and Cytomegalovirus (CMV), since these are three viruses that can cause trouble in transplant patients. They’re things most people have had and without even knowing it, and then the virus lives dormant in your system for the rest of your life. But when you have a suppressed immune system, they can start causing mischief. EBV, in particular, is one of the main causes of PTLD in pediatric transplant recipients.
Last week, his EBV came back positive. Yikes. I was really good and didn’t freak out much. As it turns out, our lab here doesn’t do the viral levels the same way that UI does, and evidently the count was still pretty low, and with the way they do the labs it was less concerning than it would have been had we gotten that same result at UI. We knew he’d be exposed to EBV at some point – virtually all adults have had it. His kidney has it (because Tiff had it). Most people get exposed to it around 2 or 3. So we’re not surprised to see this… but we’re going to watch it closely and keep a really close eye on things like his lymph nodes and his tonsils (which are likely going to come out, more on that later). If the numbers keep going up, we’ll get worried. But if they stay where they are, we won’t. 🙂
That was really it.
We’re stopping Nystatin. I’m changing the multivitamin he gets (though not quite in the way I wanted to, lol). His weight was lower today than it’s been (10.1 kilos). Labs looked good. 🙂 We will repeat labs in 2 weeks and we don’t go back for a clinic visit for THREE WEEKS!!
I forgot to bring my syringe for his food, and I’ve learned that at UI when you ask for a 60 mL Catheter tip syringe, they bring you a luer lock syringe. Yes – NEVER EVER be caught without a catheter tip syringe at UI. I don’t think they have them. So we had somewhat of a frustrating half hour where I tried to figure out how I was going to get his food from the bottle I brought it in into his stomach. It was a mess.
GI visited. They thought his poop looked mucousy, and I wanted to say, “you think THAT is mucousy? That’s nothing.” But I didn’t. We discussed my favorite topic – his ongoing mystery pooping issues – and then discussed what they’d like to do about it. We’re starting off with stool cultures, checking for parasites, infections, boogeymen, boogers, teeny tiny aliens, or whatever else in his poop. All the same stuff he’s been checked for countless times.
When those turn up nothing extraordinary, the next step involves being admitted for some sort of test where we withhold food for a period of time. It sounds like great fun. The old me would have grilled them for details, but the new me has decided I will have time to grill them for details later. I’m not going to worry about it for now. I can’t decide if I like the new me. 🙂 I actually have no idea what the name of this test is, to be honest. I’m sort of in “Grit the teeth and get through it” mode. I’m not particularly concerned about the lack of weight gain, though if he doesn’t start gaining soon, I’ll hit my threshold on that. But the poop has me concerned, and we’ve kind of done everything at this point that’s noninvasive. I’m OK with following their recommendations on what to look at next. His GI tract has been a big mystery to me since… I don’t know. A long time. I’m ready to figure out if there is a problem.