Friday, January 30, 2009

Maddy's a Drama Queen

I know the initial drama of Maddy's birth and subsequent NICU stay is a thing of the past, but thank you for continuing to pray for Maddy during her various struggles. We appreciate it more than you know.

Maddy has quite a time these last couple of weeks. First seizures and a severe bladder infection, and now RSV. She tested positive for it yesterday.

Many of you know the struggle that I've had getting the Synagis shot to prevent RSV. Synagis is not a vaccine. It contains antibodies. It wraps itself around the virus to do away with it. Maddy has several risk factors that qualify her for the shot, and you only need one: She has chronic lung disease, is on oxygen and breathing treatments, has DiGeorge syndrome which causes a lower immune system, has a sister in school, etc.... But it took us forever to get it approved, and then even longer for our doctor's office to figure out how to get the shot. I've been working on this since October. An hour after we got the test results yesterday, Precision Rx, who is providing the shots, called to confirm shipping. Grrr.... She can still have the shot and it will help her, but I'm a little upset that I had the major runaround that made this whole process take so long. Lesson learned: Just because someone says they're working on something does not mean they are working on it. CALL EVERYDAY until it's resolved. Thankfully, last week I finally got an awesome treatment nurse that got the ball rolling and will have it by Monday.

Anyway, the good news is that Maddy's lungs sound awesome and her color is good. She is labored in her breathing a bit more and her oxygen saturation is in the 80s, so we're keeping a good eye on her. I've put the monitor back on her (wishing we had the oximeter, though!), and last night I slept in the living room with her, with the lights on so I could check on her through the night.

A day in the life....

1 comment:

Kimberly said...

I have to call everyday...and make sure the job's gettin done! Not fair, but the way it is! so sorry for all the troubles. Prayers.