Pierre Robin . . . again

I called around noon to get an update on Wyatt since we missed rounds. Pat told us his feeds were upped to 45 and that an OT (occupational therapist I assume) was going to come by and assess Wyatt for bottle feeding. What she didn't mention, but we learned about from Jolia later, was that Dr. Baker was going to come by. I knew that Dr. Baker was a geneticist because Marie Waters mentioned he might come by to take a look at Wyatt. However, Dr. Baker never showed up so I figured that there was nothing to discuss with him.

So, I wasn't pleased to hear that Dr. Baker was going to stop by. I asked Jolia if this was routine for babies with cleft palates or if the doctors are concerned about something. She didn't know and Dr. Curry (intern) stopped by. She said that Debbie mentioned a recessed chin and so they called the consult. She said that Dr Ruben doesn't believe it is significant and they were sure it was nothing. He believes the cleft palate is isolated.

When we had the "family conference" a few weeks back, I specifically asked about Wyatt having a recessed chin because Marie asked me if he did when I first talked to her. And at the time I was confused and said maybe . . . At the family conference, I was told that the NICU doctors were not worried about his chin or him having a syndrome. Dr. Lee even came up to talk to me later and said that she and Dr. Ruben had specifically addressed Pierre Robin Syndrome (PRS) and ruled it out, so they didn't even think to bring it up. I even asked Pat at one point and she didn't think that his chin was that recessed.

So, you can imagine how delighted I was to have this subject brought up again . . . I am just angry because I specifically asked about this before and thought it had been put to rest. This has to do with his progress and them looking for other potential problems. Although, Dr. Curry said that they aren't worried about his progress, even though it is slow. She also said she was impressed at the progress he had made in the last couple of days will she was out.

I would love to be there tomorrow to talk to Dr. Baker. Unfortunately, Dr. Baker shows up whenever he wants to so we may not see him.

We don't know when the OT will show up either, but hopefully they will have an idea tomorrow and we know they will show up at a feeding time. I would like to observe that as well.

However, I am not above reading Wyatt's medical records. They don't seem to care.