Matthew has a feeding tube

Hello all. I just wanted to add a quick note to say thank you for continued prayers for Matthew.

He had a pretty good week but today seems to be having some difficulty eating and is getting agitated easily. On Monday they decided to do trials during the day where they kept his CPAP off and only put it on at night but when they went to put it back on that night he refused so its been off ever since. Today he has some oxygen via the nasal thing but he was completely off anything for most of the week. Seems like today he just got tired easily and needed a boost.

They took out his central line this morning cause it looked like it might be getting infected. This meant they had to turn off the rest of his drips (epi and dex were the only ones left.) He has one access in his arm for meds and blood draws that was added today. They went up on the captropril so I hope this will help lessen the effect of the regurgitation.

At this point we are not sure if Matthew will get transferred to Boston for an eval before he gets home or if we will take him up there ourselves after getting discharged from CCMC. If you asked me yesterday I would have said he was probably going home in a week but today was a little unsettling. They decided to feed him using a feeding tube instead of making him work to get the calories. This was supposed to be only for the night but today he was having a tough time eating so they gave him most of the feeds this way. Dr Del Nido in Boston said to work on nutrition and getting him as big as possible but that he thinks he can do something for the valve. We are encouraged but still scared about a second surgery and the uncertainty of it all.

I'm getting to spend a rare night at home tonight with Mary and Mikey as Mike does not work tomorrow. It will be nice to wake up with the other kids in the morning.