Day 6

Well, Harlie had a terrible night. She was up every single hour coughing. It was a very long night for everyone in the room.

General surgery rounded at 7am and decided NOT to remove her chest tube. So, that buys us at least another day's stay. The problem is that her lobes were not formed normally (duh, right?). So, when he removed the lobes, he had to cut through air passageways. So, when she breathes, air leaks out of her lung into her chest cavity. The tube allows that air to escape so it doesn't build up in her chest. We have to wait for those passageways to scar down and stop leaking air. They will come back in the morning and check again to see if it's safe. I hope and pray that it is.

Well, the much anticipated Passy-Muir Valve was a bust. She didn't tolerate it at all. She just couldn't seem to push the air out of her mouth and nose. So, she inhales, but cannot exhale. So, not a sound was heard today. The speech therapist said she would bring it back tomorrow and try again. After she left I thought of a couple things that might help. And she's going to e-mail Harlie's ENT about the trial today to see if he has any ideas. I think he might suggest going down in trach size as far as the size of the hole, but keep the length of the tube. The more air that can go around the trach, the better. So, I guess we'll see what happens tomorrow. Clearly, this will be something that we'll have to continue to work on as she grows.

The ST said that not everyone is a candidate for the PMV, so that might have to be something we accept in time. And I think this goes back to the fact that her tongue could be blocking her airway sometimes. I know that she can do it though. I have felt air passing through her mouth. So, I'm really disappointed, but I still have hope. So, overall kind of crummy news today.

On a positive note, Harlie is much more smiley now. My mom and Tom's mom came up today and are with Harlie now so I could come to the RMH to shower and change clothes. So, I better get going. As always, thanks for all your thoughts and prayers. Please pray that they can pull the chest tube out tomorrow and that the PMV will work soon!

Take care,
Christy

PS:I added some Summer Photos under the Family Section. 8/20 - 3:30
Later, Tom