If you’re familiar with the musical Carousel, and the song June is Bustin’ Out All Over, sing that to the tune. June is super full of doctors!
Not really June, though. More like the last half of June. That’s really all we’re doing last week and this week and part of next week. Just doctors.
So we had one Iowa City Day last week (got another one coming up). Transplant clinic and then Neuropsych. Highlights:
Labs look good, except the things that look bad. The things that look bad are from known, transient causes, and will hopefully straighten out on their own. We met with nutrition, who I liked way more than last time. She has more families with blended diets now, she’s a bit older now (I mean, it’s been a few years), she wasn’t as full of fresh-out-of-college advice. She gave us the GREAT news that because the bulk of T’s diet is gtube and very healthy, he can have as much oral salt as he wants. Which is awesome because 3 months ago, his nephrologist asked us to cut oral salt. And Teddy’s oral foods are basically all salt based. We switched to low salt chips and he stopped eating them. Whoohoo!
But she wants us to increase calories. Dramatically. And I already increased dramatically. I’m already not getting them all in on a daily basis because he’s so very very puky with very low volume tolerance, and we’re restricted by meds, too. (meds + food = puke, every time. Food has to be separated from meds by at least 45 minutes. Meds are at 9 and 9:30 am and 9 pm. Food can’t start any sooner than 10 am and that’s pushing it. Can’t go any later than 8 pm. Unless he’s up early and I can get food in him at 7, but no later than 7. Or if I want to feed him at 10 pm and risk that he wakes up during the night to vomit. *OMG I thought this would be easier post transplant and the fact that it isn’t is a major source of frustration and bitterness for me.*
He got a renal ultrasound the day before, for his urology appointment later this week, and nephrology peeked at it and confirmed how very very pretty his pretty pretty kidney is.
Then his urine came back all icky. So we’re going to do a 24 hour catch to screen for kidney stones and also we dropped more urine off this morning to double check for UTI.
We had HOURS between appointments and the plan had been to burn off some energy at the playground, but it was POURING rain, so we ate ice cream for lunch and played go fish before going to the waiting room for neuropsych about an hour early and playing with their toys and puzzles. The doctor came out about a half hour early and said she was back from lunch and ready to go if we were, so whoohoo.
That appointment both went well and was harder than anticipated. It wasn’t the “OK, NOW I know what’s going on with him!” that I had expected. Last year, the story was that he was too inattentive to really be doing his best for their tests, but if we had him on meds that worked for this year, it should be pretty revealing. And it was sort of, but not so much in other ways. I’m dancing around this a little, but it was both revealing and still not revealing enough. But evidently this was the visit where we finally wrote down a new diagnosis, but with the understanding that further diagnoses are definitely still pending.
I don’t know. I’ll write more about this later maybe. I’m still mulling.
So last week was Case Manager, Ultrasound, Iowa City, BHIS a few other things. This week is BHIS, therapy, dentist, some sort of screening appointment for a potential new psychiatrist, urology, Dr. Noble (ugh), a few other things. Next week, we cap off our insanity with another full (3 appointment) day in Iowa City, where we meet with the people who decide our fate. Not really. But it feels like a heavy, destiny-influencing day. Genetics. Immunology. Aerodigestive.