Two Brothers

Hi everyone,

Time for another update. Peter continues to make progress on three fronts: reduction of his ventilator support, reduction of medications, and increasing his feedings. His ventilator settings have been reduced daily over the past week. His ativan and methadone weaning has to be slower; if it is reduced too drastically he shows symptoms of gagging, fever, and anxiety.

As for his feedings, Peter is receiving a 60/40 mix of nonfat breast milk and Portagen (a non-fat formula) through his feeding tube. It is necessary to mix the two to ensure he gets enough calories. The occupational therapist continues to work with Peter on teaching him to use his mouth to eat. Peter is certainly interested, but the presence of the trach and the feeding tube in his throat, not to mention his lack of experience up to this point in life, make swallowing difficult. Today the nurse told us that because he was now receiving enough food in his feeding tube, they would be reducing his IV fluids each hour until they were discontinued entirely sometime tonight. This is good news for Peter's kidneys. Apparently the concentrated nutrition in IV fluids puts a strain on kidney function. Peter is still on pretty heavy-duty diuretics, and these can be reduced now as well.

The medical staff are hopeful that Peter will be ready to move up to the recovery unit and out of intensive care soon. We'll keep you posted! Here is a picture of Daniel's first chance to hold his little brother. Daniel was very careful and gentle, and it was a delight to see how pleased and proud he was.