Meeting with the In-patient clinic

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.

My cute face

If you ask Truman to show you his cute face, this is what you get with the hand on the chin. We have no idea where it comes from, but it's cute.

Pediatrician Visit

Weight: 19 lbs, 7.4 ounces

We saw Truman's pediatrician today and spent about 45 minutes talking about Truman's various issues, long-term outcomes, progress to date, etc., etc., etc. Dr. Suterwala disagrees with the therapists and thinks it is not yet time for in-patient therapy. We talked about how Truman's speech and texture issues, as well as fine motor issues, are neurological as a result of his three grade III or IV brain hemmorhages and that it will just take a lot of time. He also agreed that the texture-feeding issues are probably inter-related with speech. He estimated that Truman was somewhere in the 9-12 month range with regard to speech and developmental feeding. As far as the bad occupational therapy evaluation, he was sort of like, he may have escaped gross-motor cerebral palsy, but that doesn't mean he escaped fine motor problems; of course, he has issues with regard to upper body strength and fine motor skills.

He didn't think in-patient therapy was a bad idea, but that it is just not time yet and that the therapists need to evaluate Truman in terms of his larger history more than they do. He told us that pedi GI and the therapists are used to a certain protocol and time period for therapeutic improvements with kids, but he reminded us that there really aren't very many other kids like Truman. In fact, the pedi said he has never had another patient of Truman's gestational age with brain bleeds as severe as the ones Truman had who survived.

Dr. Suterwala is really good about putting things in perspective as far as the big picture for Truman. He referred us to a developmental pediatrician for a second opinion on in-patient therapy. I put a call into her office today. The pedi also wants a more thorough speech workup to better assess what we are dealing with. And next week we meet with the therapy clinic to talk about the in-patient program. So, we are keeping the subject open, but we don't feel as compelled to make a quick decision.

Although it was heartening to hear an opinion that completely disagrees with the notion that Truman is at some sort of critical point in therapeutic intervention, it is always hard to be reminded that the reason the issues aren't critical is because Truman can't be compared to even his adjusted-age peers. Although we know logically that Truman cannot escape the severity of his brain bleeds without consequence, it's hard sometimes to have to think about it in reality.