Whirlwind of an Appointment....
Alana had her GI follow-up yesterday afternoon. Back in August she had a million labs and stool samples done and though the nurse called when the results came in (they were all negative) we were still supposed to go back and follow-up with the doctor. I assumed it would be a "yep, everything is fine...have a good day" kind of appointment but I was wrong.
Because all of the labs came back normal the doctor was actually more concerned. She said she was expecting to see some sort of vitamin deficiency or at the very least an abnormally high metabolism. She actually said that Alana's chart was haunting her and she really felt that something was wrong but the tests just weren't proving it. Before this appointment I had finally made peace with the fact that she was abnormally small, but the things she was telling me had my stomach churning all over again. Basically she told me that we don't have a small family (I'm 5'9 and hubby is 6'3), Alana eats a ton of high-calorie foods, and there has to be some reason that she isn't growing or gaining weight. According to their scales she has lost weight since her first appointment there almost two years ago. It was then that she came out with the "failure to thrive" diagnosis. That hurt. I can't really explain it but that is so crushing to hear as a parent. Alana was diagnosed as FTT as an infant and now it seems we're back to square one. She also hinted that her hair loss could be related to the FTT and not ringworm at all (we still don't have those results back yet).
She explained that there are 2 more tests she'd like to do. If these come back negative she wants to watch Alana very carefully and advised us to see an endocrinologist as well. The first was a Prometheus Lab to test for IBD. If you've never had a Prometheus Lab that is an interesting experience, lol. I was given a box that I had to sign for because the shipping alone was $70. Then I had to play phone tag between my poor hubby who was at work, the insurance company (they won't talk to me because I am not on the policy), and Prometheus. I had to make sure they would cover this lab because it is ridiculously expensive. So while this is going on I'm sitting outside the hospital on a bench with this goofy overpriced box. Finally I got the word that it was approved and we headed upstairs to have the blood drawn. Alana was a trooper (and behaves really well when bribed! lol) and didn't even cry. At this point though we're all tired and cranky and head outside to the parking garage but there are roaring sirens, tons of smoke, and firefighters all geared up and running toward the garage. Apparently a car was on fire in the garage and we had to wait about 45 minutes until they cleared the garage and we could leave. Always expect the unexpected, lol.
The other test Alana will have done is a sweat test next Tuesday. This is to rule out cystic fibrosis. She's had the genetic testing for it done but apparently that test only picks up the most common mutations and the sweat test is the standard for diagnosing. To be completely honest, the possibility of CF scares me to death. That's all I care to say about that.
So anyway, not what I expected for this appointment. I'm terrified but optimistic. Alana is still struggling with asthma issues daily but I'm waiting to get the results of these tests before hauling her back to the Pulmo. On a positive note, Madison is doing great and is learning to use her inhaler without the spacer, lol. She's beyond proud!