Sunday, September 23, 2007

Evening Update

I'm sorry we haven't been able to update since last night. As Gray said earlier, it's much more difficult to post now because we are in his room all the time. When he was on ECMO, there wasn't much room for us, so we were able to be on the computer more. Keep with us though! Keegan's not out of the woods yet, and we will be able to access more once we're on the recovery floor.

Today was a pretty stable day. He is off sedation and most of the pain meds again. That means that he's more alert, but he's also more aware of every ache and pain...which means more crying and general fussiness. My heart has never broken more than to see my son in pain and not be able to pick him up to comfort him. Gray and I are still anxiously waiting the first time we get to hold him. It seems his ventilator tube bothers him the most, and I guess rightly so. I doubt I would like a tube down my throat either. Luckily, he's off the nitric oxide completely, so the ventilator is next to go once his chest is closed.

The surgeons are hopeful that they will be able to close his chest either tomorrow late or on Tuesday. We are really looking forward to that. However, more of his swelling needs to go down. His hands, feet, and eyes look better, but his chest wall, stomach, and neck are still pretty swollen. This is partly due to the fact that his kidneys are flushing but not filtering - what the doctors call "dumb pee." The chemicals they look at to judge filtering were down very slightly today, so we're waiting to see what they do tomorrow. They are still watching his blood pressures and altering the meds to keep them where they want them. It seems kind of difficult to reach a happy median. Tomorrow they will do a small surgical procedure to get a new arterial line since they couldn't get one other than his umbilical.

Please keep praying for his kidneys to work well so that the surgeons can close his chest early this week. Not only does that mean improvement, but it also means MORE PICTURES! =)

Lastly, please pray for the family of another CVICU patient, a 14 year old girl from El Paso named Melissa. She had a stroke in her sleep last Tuesday and was brought to Children's on Wednesday while Keegan was getting his new heart. The family found out yesterday that Melissa is brain dead, and today they took her off life support. Please find time to keep Melissa and her family in your prayers.