At the Heart of it All: New Heart Day #10

We woke up today with a prevailing thought that we have to get out of here. Our normally happy, mellow baby has spent most of the last 48 hours crying and very little of it sleeping. We're not really sure what the problem is but ever since he had all those procedures done yesterday he's been almost inconsolable. Personally, I think he is having reflux around his feeding tube and that he hated the fortifier they were adding to his breast milk/formula combo (it smelled horrible). But the nurses and doctors keep dismissing him as just a colicky baby despite the fact that he's never been like this before. He screamed with each feeding, lying down, swinging, and snuggling. In fact the only way to keep him happy is to either walk or wheel him around the hall.

He would fall asleep for brief periods of time but would almost instantaneously be bright eyed the minute you stopped moving. Since we'd been on the floor Thursday night I hadn't slept so Scott took over on Friday night. He finally got him to sleep at about 5am and we put his next feeding just straight down the Nasogastric tube. I felt quite justified when he started gurgling formula up through his mouth and they finally agreed to start some Zantac (which by the way we do prophlactically in all adults with a tube in). In the midst of all this he threw up everything including the nasogastric tube.

When the team came by for rounds they thought we were doing well from a cardiac standpoint and thought we'd be ready for discharge on Sunday. Luckily knowing the system I asked what they had planned for us overnight - the answer as I suspected was absolutely nothing. So, I reasoned that we could just as easily be discharged Saturday afternoon. We were hoping that our happy baby would return when back on his regular diet in his normal environment but even if not, we couldn't face another night of pacing the same 40 yards of hallway (his security bracelet wouldn't let us go any farther). After some reasoning they seemed fine with my plan but wanted his feeding tube replaced. Now I didn't have a problem with the tube if it was needed but insisted that we be allowed to feed him without the fortifier through his normal bottle first. As suspected he did fine with this and after a little arm twisting on my part they sent us home with just the supplies so I could put the tube back in only if necessary once we were home. Another job perk I suppose.

So after his pacer wires were removed and one last bit of torture with a repeat chest xray on the rack,