I'm pleased to report that Brosie is doing well. He seems to be back to his baseline respiratory status and O2 requirement. We are continuing to use the CPAP at night only.
He started a new seizure med, Zonisamide, last Wednesday, and is simultaneously weening off of Phenobarbital. It is to early to say how it is working, especially since he started at a very small dose. I am excited about getting him off of the phenobarbital. We have talked about this for quite a while and have actually reduced his dose several times already. The problem is that it can interfere with the absorption of other meds, and more troubling is that there are questions about its effects on the developing brain. Despite this it continues to be the first drug they put epileptic babies on.
Brosie went in my neighbor's pool last week. I just put his legs in, apparently it was too cold for him so he climbed right up me. Instead we floated him around on a raft. Hopefully the water will warm up soon and we can try again. Of course it is scary with the trach, but I think it is a nice sensory experience.
We hope you are all enjoying your summer!