We have finished our final appointments down here and are exhausted. Trey was up last night until 12:30 am and we woke him up at 4:30 am so that he would fall asleep during his EEG this morning. He did, which was great, but it made for a rough day for all of us.
At 2:30 we met with Dr. Szabolcs, the doctor who will do Trey’s transplant if that’s the route we choose to take, and Dr. Escolar. It was another 2 1/2 hour appointment, but here are the highlights: Dr. Escolar charted Trey’s development tests from yesterday and his tests done at home, and until 3 weeks ago, his development was a little below the 50th percentile, but on an upwards swing. She thinks that his sudden drop in development is due to his ear tubes falling out in the past 3-6 weeks. As a result of this (the fact that he’s doing so well and the observation that his sudden drop in development may be due to hearing loss), Dr. Szabolcs thinks we should not proceed with transplant right now, but come back in 3 monthes, after new tubes have been put in, to do another development test and see where his development is at. If his development spikes back up and continues to follow within the normal range, they will likely not suggest transplant. If his development does not go back up, they may want to transplant. We will plan to come back to Duke in 3 monthes.
Another major discussion we had was regarding transplant at BCCH. Dr. Szabolcs did say that it is not a problem to give the transplant doctor at BCCH the protocol for CBT, but he does feel that because of his experience with Hunter Syndrome and how these children respond to certain medicines and the specifics of it all, that it might be safer for Trey to get his CBT done at Duke. So, if we do decide to proceed with transplant, it will be done at Duke.
We also saw Simon and Marie tonight and will be spending the day with them tomorrow. Finally time to play a bit.