This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.
Saturday, April 2, 2011
Wow, Now That's A Load (Day 27)
I missed yesterday's update as I came to the hospital in the evening to give Jesi a break from her 2 week stint without leaving this place. Since I was sick last week, I couldn't be in the hospital and Jesi couldn't be at home around a bunch of sick kids. Faith is doing well today. She has been uncomfortable at times, but for now she is sleeping very comfortably. The wonderful news of the day...we removed her oxygen this morning at about 6. She has been prone (laying on her stomach at an angle with her head down) most of the day. She slept prone from 1am to 6am then we suctioned her 6:15-6:45am which is quite a bit of time to be suctioning junk. And WOW was it a lot, but that is good. I think it is finally coming out, and it is so nice to see Faith sleeping without oxygen or a BIPAP, and she's hanging at 93-95% oxygenation even with remaining congestion. One issue we have to work on is her jaw. We have stopped turning on the right side because she is off center so we will continue turning on the left to get it back in line. Looks a little funky right now, but should be fine. We are still working the sedatives slowly down to avoid withdraw issues. Gotta watch those 2 year old trisomy 18 drug addicts. She is quite the little trooper.
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Day 27!!! It feels like year 27!!! Keep up the good work! It is comforting to know I am near you!
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Wow - 30 min. of suctioning junk! That is impressive! I bet little Faith felt so much better after. I bet 27 days does feel like eternity! We're still praying!
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