Just got back from several hours visiting Lewis. Both Jenn and I (Josh) were able to hold him for a good long time today. Anne and Dan and Hank and Judy all came by for brief visits while we were there. Not too much change since yesterday, but moving in the right direction. We had a conversation with a different doctor today, which was tough - since the long term picture is totally unclear, it is pretty difficult to work through emotionally. All the doctors have a different perspective and the transition from one to another isn't easy. Rather than focus too much on what ifs, we're trying to stay postive and focus on each day's progress.
Respiratory - slow progress. Lewis is still is having trouble dealing with secretions from his chest, but they think they may be able to wean him from the nasal cannula within a few days.
Feeding - up to 30 ml of milk every 4 hours, and may bump up to 35 tonight. The goal is 60 to 70 ml, which would allow them to remove the IV line through which he presently gets a portion of his nutrition. The IV line is in his belly button and isn't safe there too much longer, we're told.
The Doctor is also concerned with the muscle tone in the lower part of Lewis' face. She thinks that may be slowing his ability to suck effectively. Sucking, swallowing and gagging are key reactions before he's able to feed normally. Lewis will begin working with Occupational and Physical therapists shortly on this sort of thing.
Meds - they began to cut the does of Phenobarb last night, apparently getting that down takes a while.
No comments:
Post a Comment