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Day Ten of our stint at Children's

I’m definitely not one for bathroom talk, but….She POOPED!! Things are starting to move! The contrast liquid they put into her belly a few days ago, the stuff that shows up really well on X-ray to see how things are moving in her GI System, has finally progressed down to her bowel showing us that her intestines is starting to wake up and get back to normal. This means….no obstruction and NO SURGERY!! Wooo!! The true test will be resuming her feeds in a few days and making sure she tolerates it, but just another small step in the right direction.

In the respiratory department, they have reduced her mask settings down to what she is on at home. They will start giving her breaks from the mask over the next few days to wean her down to nasal cannula oxygen during the day, and eventually back to room air.

And, best update I have…I got to hold her! Its been 10 days since I have held my girl and it was wonderful to get some snuggles and smooches in…until she peed on me. Stinker stinker! Totally worth it though. The hospital PT and OT got her up and sitting in her bed giving her sweaty back some fresh air and letting her wiggle before gently maneuvering all her tubes and wires to get her into my lap, not an easy feat.

She does have some uncomfortable movements going on, but we think that coming off so many strong medications may be causing her some withdrawl symptoms and may be allowing her neurological system to wake up (we are starting to see periodic seizure again). On top of the fact that she has been sick and stuck in a bed for the past 10 days, I’d be uncomfortable and trying to escape too. We anticipate this to calm down but will give her some Melatonin tonight to hopefully help her sleep.

Well thats about all I have for today…short updates are good updates! Happy Friday!







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