Hospital World

Lily went in for a cardiac cath on Monday November 30th. We ended up staying for 4 days total. It was going well the first time Dr. Wax, Interventional Radiologist, came out. Then he said that he found some collateral arteries . So he coiled/plugged two of them. That should have made her oxygen levels higher. Finally he came out to say that they found blood in the lung in the lower left lobe which was blurry on the xray we later saw. In the end, we came in with Lily sating in the mid 80's and left with a kid sating in the 78 to 84 range and added Viagra/Revatio to her list of drugs. It was either that or go home with oxygen. I am waiting to hear from our card about the discussion that had about further steps for Lily they had in conference on Monday about her.

The best thing about our stay was again the nurses. They rock!!! It was strange being back in the PICU for the first time since 2007 after her Glenn. They were fantastic. Andrea, Rachel, Megan, Tommy...kept me calm and thinking about other things like travel and language, two of my favorite topics. aside from LILY!!


One of the nurses said that she knew how to take care of these kids in the hospital, but when her son was born, she had no idea! I would have never thought of that. 5 years ago I never would have guessed that now I would be able to understand when someone says " We are going to go in an explore the LPA and coil any extraneous arteries." I could sound like a nurse of a doctor now.


Speaking of medical issues, my cousin Cindy was featured on Mystery Diagnosis on the Discovery Health Channel this past Monday night at 9pm CST. She has MPA or microscopic polyangiitis. I had no idea how absolutely painful and invasisve this disease can be to your life. I hope Cindy stays in remission! Get more information at http://www.vasculitisfoundation.org/microscopicpolyangiitis.

Lily is starting to want to stand now and not fighting us when we help her to do it. She still fights the PT/OTs though. Big surprise.