August 27, 2010

We should have known, given Benjamin's history, that a smooth post-op recovery would be too good to be true. He's had a really rough day and so have we. Benjamin had two serious spells. It was like reliving a nightmare. We weren't there when it happened this morning, but we were there this afternoon. We weren't in his room at the time, but heard the alarms go off and just knew he was the one that coded.

Right now he's on the high flow nasal cannula, requiring 40% oxygen and working really hard to breathe. The pain management attending checked him out around 8:30 pm and said Benjamin's epidural isn't functioning properly. Basically we think he's in so much pain that he's actually shutting himself down. We're fully expecting he'll end up intubated by morning, but we're hoping that won't be the case because he'll take some major steps back. He still has the epidural in because they think it's helping a little bit, but they also started a Fentanyl drip.

Depending on how he's doing, the plan is to put in a central line tomorrow (if they can). They tried to get another peripheral IV and couldn't even do that. He's going to need PN and Omegaven again so they really have to find a good artery!

This is so unbelievably hard to deal with right now because he looked great immediately after surgery. Seeing your child in pain is the worst feeling in the world. We can't even hold him. All we can do is touch him, tell him we love him and that he's doing a good job.