Fighting a cold

Madeleine continues to fight her cold and appears to be slowly winning. We're happy that she's been able to fight the cold without ending back up in the hospital while at the same time, we're cognizant that we can't wait too long to get her in if she takes a turn for the worse. Here's the really frustrating part-- due to her pulmonary hypertension, there are times when her oxygen saturation levels will drop and the best course of action is to get her comfortable and leave her alone. On face value, that flies in the face of common sense as the immediate concern is to assume that Madeleine's trach is obstructed and to suction to clear the obstruction. Unfortunately, suctioning the trach makes Madeleine mad and when you have pulmonary hypertension and get mad, your lungs clamp down, making it harder for blood flow to get to the lungs essentially creating a vicious circle. We've been extremely pleased with the home nurses so far and we're slowly getting them to recognize when suctioning is warranted and when Madeleine just needs to calm down.

On a different note, I'm happy to report that the medical supply company came out today and changed the pulse oximeter (pulse ox) for a new one. If you've ever seen the movie "Office Space" you'll know of the scene where the two computer programmers beat up the fax machine in a field. I've had visions of a similar scenario with the pulse ox when it begins beeping for no apparent reason in the middle of the night... Its maddening and we're hopeful that the new machine will make life easier and sleep more manageable.

Despite all of these issues, we're still having a great time with Madeleine home and we're slowly settling into a routine with the nurses. We've settled on a core team of four nurses and as they become more familiar with Madeleine, it will take some of the strain off myself and especially Kirsten. Kirsten is the one that worries about all of the small, important stuff and so she's necessarily spent a lot of time training and talking with each individual nurse. I play the role of "big, goofy, happy dad" and also make sure at a high level that the nurses are competent and realize that "big, goofy, happy dad" can turn into "big, angry, protective dad" when warranted. Its a role that I'm perfectly suited for and I recognize how much more difficult and important Kirsten's role is. Once we get Madeleine over this cold and the nurses are fully trained and comfortable with Madeleine, I think Kirsten will relax a little bit. In the meantime, thank her for me if you get a chance.

That's all for now. No new pictures the last few days-- Madeleine isn't quite as attractive with snot dripping down her face. :) We'll try to get a new video and some pictures up once she starts feeling a little better. Take care,

Brent