We’re missing something.
At least one something.
Here’s a general update:
- Croup. Teddy continues to get croup monthly. His regular Otolaryngologist decided that he’s above her pay grade at this point, so had us see aerodigestive at UI. (and we want to see aerodigestive at Cincinatti – and I think we’re still headed that direction – but I don’t regret going ahead and seeing them at UI.) That doctor did an in-office scope on Teddy and discovered a few things. a) his left nostril dead ends. That seems like a big thing to miss for 6 years, eh? That’s going to be a new thing to tackle but not just at the moment. b) his airway is just awful looking. Very angry tissue. c) he didn’t see any stenosis.
So what the heck? Now he has no stenosis? Did he outgrow it? Maybe. But there goes the “he has subglottic stenosis so that’s causing the croup” theory. (which means the “he probably needs surgery to correct this” treatment plan is also out the window for the time being, which makes me happy.)
He thinks his airway looks like severe reflux. Even though reflux was ruled out by a pH probe. Even though he’s been on reflux meds before with no noticeable difference. Even though, even though, even though. And this isn’t the first time we’ve heard it, and it was even a theory I had. Even after the pH probe (because they aren’t 100%). So I’m on board with this as a working theory. We’re trying a PPI again and we’ll see. He said to do it for 2 months and if he hasn’t had croup in that time, we can figure it’s working, but I’m assuming that we’re also going to do another scope. In the meantime, after 10 days on the PPI, he got croup and ended up back in the hospital, so….
- Transplant is concerned that he’s getting sick that often – and then I told them that this doesn’t even include when he’s sick and doesn’t get croup. I don’t even keep track of that. We’ve been working with a new therapist for about 8 months now and she said this week that she has not seen him NOT sick – and she comes weekly or every other week. He’s sick ALL THE TIME. People want to know why we never go places and do things, it’s because Teddy’s ALWAYS SICK. They’re concerned, so they had us see immunology. Immunology basically wanted to run a bunch of labs, but based on the labs they’d run the last time they saw him (pre transplant when he kept getting line infections), they had an idea of what they’d see and had worked out a treatment plan that we’d proceed with when the labs came back looking as expected. The labs have come back. They’re not as expected. I don’t have the first idea what they mean, because immunology labs are HARD, man. But some things are WAAAAY of kilter.
- Genetics. Meanwhile, I requested to see genetics again. Last time we saw them, he had far fewer diagnoses and they were really just looking at liver things, or liver/kidney things, mostly to rule out big things that could affect transplant. They never did any general overview stuff. He has SO MANY diagnoses right now, it’s hard not to wonder if something doesn’t tie a lot of things together. I have a few theories from Dr Google, and I think they’re good theories. We’ll see what they say. Microarray came back normal.
- Weight/eating. He recently started a new med that has, as a side effect, appetite suppression. He has stopped eating by mouth almost entirely, and he’s lost a not insignificant amount of weight. We’re trying to stop that weight trend by increasing tube feeds, but I think we have to increase them more than I realize, or else something else is going on.
- CMV He continues to have elevated CMV levels. He’s been on a treatment dose of Valcyte for a month now and the level’s finally gone down. He’ll be on treatment dose for another month, then down to a prophylactic dose for a while. Again. Me = not a Valcyte fan.
- There’s just something else. Something. He’s struggling. And I don’t know what it is, what we’re missing, how we’re missing it. I’m hoping Genetics, neuropsych, immunology, and Aerodigestive can suss this out. If it doesn’t happen on its own, and if nobody has any major breakthroughs on their own, I’m going to ask if everyone – neuropsych, transplant, genetics, aerodigestive/ent, immunology, and either letters from or conference calls with OT and possibly his BHIS worker – can get in a room together and share ideas. We have so many pieces. So many. How do they fit together?