Monday, 4/11

Our first day at CHOP has not been a smooth one. Dinky, excuse me, "Edison" has just not had a good day. He has had multiple, multiple episodes of bradycardia and desaturations, some of which did not resolve very quickly. He has not been this way the past several days so it's been very concerning. They made some adjustments to his ET tube (the one in his airway) and are hoping this will help things.

We are scheduled to have the PDA ligation at 8 am. We are pretty nervous about this next step but hope that it will help with some of his ongoing issues. We saw his X-ray today and his heart is definitely enlarged so this has to be resolved. They will do a bronchoscopy just prior to the surgery to reevaluate the airway and the bronchus.

It's hard to say how well we're settling in. Today has definitely not been a good day so that doesn't help. It's also hard to get used to a new group of folks who aren't very familiar with him. He's in a room with 6 other babies, most of whom are also on a ventilator, so there are a lot of eyes on him, but that also limits our privacy and quiet time with him. Lots of adjustments. We'll just take it day by day but definitely up those prayers and positive thoughts right now :) Our Dinky, EDISON, needs it. (and his mom and dad do a little bit, too :)