May 22, 2002

Benjamin has been breathing without the help of any artificial means since yesterday morning. He still has lots of secretions and doesn't seem to be swallowing much. He's been having several episodes (called desats) where he gets a buildup of mucus which lowers his O2 levels and heart rate. It's very scary to watch, but he comes around after a little stimulation, nasal suctioning, and a few puffs from the oxygen mask.

He has been moved to a crib. We were allowed to bring him some toys and clothes from home. Last night we gave him a bath and he was weighed. He now weighs 7 lbs 12 oz. He seems much happier without all those tubes.

The plan for now seems to be wait and see. The doctors want to give him time to recover and see if his number of desats decrease. They will redo the MRI and EEG to see if there has been any changes. They may still do a muscle biopsy.

Because of the high risk of aspirating milk, they have discontinued feedings for now. He continues to be nourished via IV.