We got home this morning from an overnight visit to Children's. And it was one heck of a night! We had four appointments in Seattle, echocardiogram, swallow study, clinic walking test, and a long visit with her cardiologist. After all of that we headed to see a good girl movie before we had to check into Bellevue Children's Hospital for her sleep study. The movie was Ironman 2, go figure. She was mad that there were Shrek posters everywhere but it did not start until today. Boo.
We left Bellevue this morning at 6:00am awaiting more test results but so far, no more "bad" news. Except for some mention of starting another medication for blood clots. Her progress is slow (as they expected). Her cardiologist doubled all her medication and we will wait to hear how the results of the sleep study go. They did not have to come in and give her "emergency" oxygen like they warned me so I was happy about that! A "sleep" study I learned involved very little sleep, especially for me, I was awake all night!
Once I got the coat of Crisco-like glue that was matted all over her hair out, she started to smile again. Until then she was pretty ticked about the whole ordeal.
We are home, taking pills and waiting good results! Thanks for all the kindness.