We last left our hero strolling casually out of the GI exam room and being moved to a nephrology exam room. Because God forbid you stay in the same room for different doctors.
So. Nephrology. His electrolytes are all off. Not a lot, just a little. Some of it can be explained by the Prograf (one of the immunosuppressives), which can cause some off-ness in electrolytes. Some of it can’t. Dr. Z wants us to reduce his intake of phosphorous, but when I followed up with her via email following our appointment, he’s already getting about the amount she wanted him to get. She actually doesn’t want us to take his phos down any further than it is at the moment, because he still needs phos for healthy bones.
Because we stopped his multivitamin, we need to add in Vit D now. His level was 10 something and it should be 35 or so. Oops. Fish oil is all kinds of good for kidney transplant recipients, so we’re going that route, whoo hoo. (We were not able to do fish oil before.)
His weight was… 10.57. Oh, yeah. Uh huh. I really had to struggle to stop myself from saying neener neener – but I shouldn’t get too cocky, it’s only .27 kilos and is HARDLY a trend yet. But even so. I TOLD YOU SO. I knew he would start to gain again as he approached/turned two. Yeah, so a post-transplant period of catch-up growth is technically the norm, and he certainly has room to catch up… but since when has he been interested in doing the norm? I actually have a theory that part of our problem was that we basically forced weight onto him to get him “big enough” for transplant – and that weight he had in March/April wasn’t “real” weight, if that makes any sense.
I mentioned that he had been holding his penis and saying owie before peeing so we ran a urine culture just to be on the safe side – it was fine. 🙂
Then I asked about his Epstein-Barr Virus (EBV) level. On 11/7, the EBV popped up as “detected” for the first time, but as less than 2000. On 11/25, it had jumped up to 6260.
That’s a big jump.
EBV is one of the big risk factors for PTLD, aka, The Stuff Of My Nightmares. PTLD likes to hide in tonsils. Teddy’s tonsils were actually bigger yesterday than they have been (and they’ve been plenty big all along). Dr. Z’s been wanting to take out his tonsils for a while (and I was initially reluctant, but after actually researching it, I was on board), but after the lab results and the fact that his tonsils were bigger this week… that was it. I have a separate post I’d been working on about PTLD and tonsils and how they might come out in the future. I need to update it, but will finish it soon if you have a burning desire to learn more.
So she wanted us to see the ENT that handles all the transplant kids sooner rather than later. Sooner ended up being 3:30.
The plan from here is:
– increase dose of antiviral med.
– recheck EBV in the clinic and wait for results (should have results in a few days), and then also recheck in 2 weeks.
– biopsy the tonsils to check for PTLD.
– If biopsy comes back with PTLD (please no) or the EBV levels are up even higher, he’ll have a CT scan to check his lymph nodes (another place PTLD likes to hang out) and we’ll have a consult with heme/onc. (so she says this and I spent a good 30 seconds wondering to myself why we’d need to see hemotology. um… duh. We’d need oncology.) (at this point, I wanted to stick my fingers in my ears and hum.)
We left the hospital at noonish and headed over to the satellite office at Iowa River Landing to see otolaryngology (ENT). They had said to come right over and they might be able to work us in sooner. So, despite my hunger and fact that I’d had a handful of Chex Mix for breakfast, we headed right over. And spent the next 3 hours in the waiting room. Honestly, it wasn’t too terrible. The people watching was awesome. We did a lot of rearranging of the space. Teddy was dissatisfied with the placement of the chairs, and the placement of the tissues (I mean, really – they were IN the boxes – they’re much better outside of the boxes). There were cars out the window. Things to climb on. People of questionable health status to try to make friends with. He gave my car keys to at least a dozen strangers. Distributed magazines to everyone.
The ENT was super nice. She good naturedly said that she doesn’t really usually let other departments boss her around to this degree, but when transplant says they want a kid’s tonsils out and they want them out right now, she basically does what she’s told. She did say that the bleeding at 5 days post can be quite severe – especially if is actually PTLD, I guess there can be quite profuse bleeding, to the point that she wanted us to be ready to call 911 if it seemed life-threatening. More ear plugging and humming there.
They essentially made room for us in the schedule. Her first available was in February, but his surgery is Dec 17.
I’m really not looking forward to it. I’m also trying to come to terms with removing yet another body part from my boy. We’re up to… five and six? His tonsils and adenoids will be the 5th and 6th body parts he’s had removed? Ugh.
The good news is that since he doesn’t eat orally, he won’t be constantly irritating the scabby area as it tries to heal. So, there’s the upside to the utter lack of oral intake. 🙂
We left town at 6:30 in the morning, and got home at 6:30 at night.
And we conclude with pictures of my adorable boy. He was SO tired waiting for the doctor.