What a circus!

We don't really have any more news. There is a new attending dr today and I was able to sit in on the briefing with the residents - that is totally fasicinating and right up my nursing alley! The swallow function was postponed this morning and changed to a barium enema. Poor girl! She and her daddy are downstairs for that right now. I stayed up here to shower and pump. It was another awful night last night. We got her down about 9 fairly easy because she was so exhausted. Well, it turns out that respiratory ordered the wrong tests to be preformed on her nasal wash, so at midnight they came in and woke her up to do it again. We were fit to be tied I tell ya!! After 2 hours of screaming, one of the nurses came and got her and took her outside in the hall to play (this is the 2nd night they've had to do this!) Ugh! Being in the hospital is such a pita!! She was scheduled to have a swallow study this AM, so she was NPO after 5am. It's now 9:45 and 2 people have told us that the swallow study has been cancelled for today and then the speech patho came in and said she was ready!! AARRRGGGHHH!!! (I think we have a goofy resident, he wears us out!) Poor kiddo is in here for weight loss and they keep starving her and blowing our calorie count out the window! I can't even begin to explain how incredibly frustrating this is! I believe that we will have a neurology consult sometime today due to Madeline being so hypotonic for her age. Every other physician that we see says that "she is floppy" She has all had several episodes of rolling her eyes back in her head and her body wobbling around. Reminds me of the clown dolls with the round butt... you know the ones... you punch them and they flop back up. That's what it feels like she would do if you hit her.. she just rolls around sitting up. Totally weird and freaks us out a bit when she does it. Well, a nurse saw the episode yesterday and evidently it freaked her out too. Mike isn't going to be happy to learn that our release date has been pushed back again! Frankly, neither am I, but it is do incredibly difficult to get into Texas Children's as an out-patient, so this is bitter-sweet! I do think that once we get her to sleep tonight I will refuse all treatment until she wakes tomorrow. I can't handle the screaming anymore. Did I mention that I have a migraine??? Again, thank you so very much for all the love and prayers. We feel God's presence with us and know that we are not alone. We cannot wait to get home, but feel so blessed that we are in the best place for Madeline's care. Please continue to pray for not only us, but also for Madeline's physicians.

Love,
Sarah