Dr. Partrick- A gift indeed!

Posted May 28, 2010 11:45pm

So today was very emotional as expected. We made it to Denver safely. We met with Dr.Partrick and yes, he was very nice to Kaden. Kaden didn't feel like eating anything today and is almost completely g-tube dependent now. On the way home he complained of his tummy hurting. Gran vented his g-tube and found another GI bleed (bleeding of the stomach) in his residual (undigested food that comes out of his g-tube button). We found the nearest gas station to get his tubing cleaned up. He was pretty quiet the rest of the way home and just enjoyed looking out the window. I'm so sorry to all that we don't have more of an update, but we really won't have any more details until we meet with the second surgeon on the 7th. Dr.Partrick is of the belief that Kaden SHOULD have both surgeries at once, so now we're getting different opinions. He thinks it would be more humane to just get it all done at the same time and heavily sedate Kaden and put him on what most of you would know as "life support" until he heals from the TE Cleft repair. Either way, we just want to be as humane as possible. He addressed the autonomic threat, the possibility of his stomach migrating into his chest cavity and his collapsed lung. He also talked to us about the fact that this MUST be done. This is not an elective procedure. It's hard to explain the lack of control we feel knowing that our son must endure this and that there is absolutely nothing we can do to make it all go away. Just as I thought I was coping with this situation, I find myself blubbering when I least suspect it. Part of what's added to our fear is getting his apnea report from Apria and finding out that he's had over 360 episodes since the beginning of January where he stopped breathing. He's had a major increase in bradycardiac episodes as well. So anyway, we'll see how tonight goes. Hopefully we see Littlest feeling better by morning.