Well…….we didn’t get the results we had been hoping for

His pressures are about the same. Which is really confusing as his BNP is perfect. There is no leaking in his valves. His EKG has been improving. He’s gaining weight. All signs were a go for some good news.

There is also an issue with how well his body is oxygenating itself. Parker’s lungs look good on the films and videos they took. So they can’t figure out what is going on.

The anesthesiologist had some issues with Parker’s trach and leaking. He was pretty acidic. So we are most likely looking at a cuffed trach next. And a new drug, a drug like lipitor, has shown some promise in kids with PH as well as Ds.

Emphasis on some.

We will also be meeting with Parker’s lung specialist soon.

I can’t tell you how much my heart hurts right now. It’s like I was getting used to the idea of my kid getting healthy, and the universe just sent us a big ‘ol “sorry, but that ain’t how it is going to be going down after all” message.

I KNEW I should have gotten that stinkin’ Valium prescription filled.

19 Comments

  1. Awesome Mom Sep 26, 09
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