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.
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4 comments:
Glad you are back home, we will be praying that the new meds help and Miss Lily is home for the holidays. Also praying and thinking of your cousin.
Great to hear that Lily is standing without a fight with you guys now! Great job Lily!
vergeKaren,
I just had my second child in September and she has been diagnosed with charge. I was wondering if I could have your email or phine number and ask you what some of your big battles have been. I was reading your blog about Lily and she and my Hannah seem to have similar characteristics of charge. I know that each kid is there own but I was wondering if you had some in sights to share... at this moment we are trying to get Hannah to eat by mouth and I was wondering if Lily had a g-tube and what her story is there... anything helps. Thanks so much~
Sorry I have been missing your posts, I am glad you are home and I hope things are going well. I also hope you had a lovely holiday. Great job on the standing Lily!! Keep it up!!
Crystal and Eva
hey there... unrelated to your post, but in response to a comment you left at my blog:
the blue ribbons idea we took straight from their blog. we thought it was a GREAT idea.
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