We met with the in-patient clinic today and put Truman on their schedule for July with a plan to bump him to April if availability opens. That way, that ball keeps rolling forward while we assess as we get closer. If things do become emergent before then, (i.e. more immediate plans for a feeding tube) they will make room for him sooner. They agreed with Dr. Suterwala (in contradiction to his behaviorial feeding therapist) that Truman is not at a critical point.
The other thing we talked about is increasing his texture-feeding sessions and get some intense lessons in the meantime for both me and Ben to work on at home. Of course, we already do some things, but we don't have a strict protocol about using the oral therapy brush how many times a day, how many meals we challenge him at versus the ones we don't, etc.
They also asked for permission to start working with the GI specialist on Truman's motility issues with food. Up to this point, they have consulted only with the pediatrician. They want to ask the GI specialist to order a motility study. More studies, how fun! If it doesn't change the treatment protocol, not sure whether we will agree to it. We'll have to discuss it with the doctor.
On the same subject, we also learned today that the underlying ingredient needed for erithromycin was discontinued in the last couple of weeks, so we are back to figuring out what drug to use for stomach emptying. The compounding pharmacist and therapists both were going to talk to the doc about what another option would be.
The other thing we talked about is increasing his texture-feeding sessions and get some intense lessons in the meantime for both me and Ben to work on at home. Of course, we already do some things, but we don't have a strict protocol about using the oral therapy brush how many times a day, how many meals we challenge him at versus the ones we don't, etc.
They also asked for permission to start working with the GI specialist on Truman's motility issues with food. Up to this point, they have consulted only with the pediatrician. They want to ask the GI specialist to order a motility study. More studies, how fun! If it doesn't change the treatment protocol, not sure whether we will agree to it. We'll have to discuss it with the doctor.
On the same subject, we also learned today that the underlying ingredient needed for erithromycin was discontinued in the last couple of weeks, so we are back to figuring out what drug to use for stomach emptying. The compounding pharmacist and therapists both were going to talk to the doc about what another option would be.
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