Walk on Water

Reading a great book called "walk on Water. The miracle of saving children's lives" by Michael Ruhlman and it is fascinating. It doesn't read like a textbook - in fact it is a real page turner. Written by an author who spent several months in one of the top pediatric cardiology hospitals in the US it gives me a glimpse of things I will never ever see - things Macsen will have to go through without me by his side. And while reading the accounts of open heart surgery I have to remind myself to breathe and to stop picturing Macsen lying there I am devouring the depth of information Ruhlman put into it.
I had to stop reading to quote an excerpt because I know so many people still don't understand why we felt we had to go all the way to Philadelphia for Macsen.
"Obviously, as in any profession, there must be a range from worst to best, with most falling somewhere in the middle. But here, where the stakes were so high, how could anything short of the best be tolerated? How could a surgeon be on the low end of the scale and still be allowed to operate? A sloppy accountant was one thing, or a lazy carpenter, or somebody just OK at most any job - but an inferior children's heart surgeon? Yet there was no oversight at all over the peds centers, except where the surgical outcomes were completely unacceptable, or where pressure from the media and outraged parents, perhaps sparked by a whistle blower in the hospital, prompted a widespread investigation. "

That is scary and I have seen it over and over again in the 8 months since we were diagnosed last year - hospitals attempting to do complex surgeries on these babies but not having the expertise or experience to do so successfully. So many parents trusting then transferring - hopefully not too late.

Excited to read more!
And here's a good night picture from Macsen - day 5 of the flu was much like day 4. Hopefully tomorrow we will be on the other side if it!