Breathing tube is out but Matthew is on CPAP

They took the breathing tube out on Thursday afternoon (yeah!). The doctors intended to take it out in the morning so they turned off the sedation in order for Matthew to be fully awake but he, as usual, doesn't like to follow their plan so he slept till around 2 PM. He did well without the tube but by evening he was getting anxious and withdrawing hard from the sedation drugs. Mike and I were getting nervous too but the team that was on that evening was very reassuring and they worked with Matthew to get him the right balance of medication to help him relax. Mike spent the night at the hospital so I could sleep at home - Mary and Mikey liked that.

Friday morning I called into the nurses station and Matthew's CO2 numbers were higher than they like so they put him on CPAP (continuous positive airway pressure). Its similar to having oxygen through a nasal cannula but it also provides some level of support to puff out the lungs. He seems to be doing well with it and his CO2 numbers are now normal.

I got to hold him today for one of his 3 feedings. It was real nice but did not last too long. He only got 20 mls (2/3rds of an ounce) each feed! He received a total of 3 feeds today spaced about 4 hours apart. He will receive once more around 4 AM Sunday and then they will decide in the morning if they think they can increase the feeds based on how well he has tolerated them. So far he is doing just fine but we have to watch out for his tummy. He has not eaten anything except these 3 small feeds in a week! He does receive IV nutrition but I know he is happy to be getting something into his belly.

So, the hope for the next couple days is to take things slow on the feedings and perhaps get off the CPAP. Then they will move on to more weening of medications. We are cautiously optimistic.

Lori