Sunday, October 26, 2008

No sleep yet again.. feeding tube clog and alarms(Spinal Muscular Atrophy Type 1)

Lizzy has been feeling great but darn it every-time she doses off on her bipap at night the her pulse ox starts going off because of her o2 levels drop. She drops for a second and then back up to 98-100 O2. I cough her, suction her and she is not having any problems. I change her mask , I am using her back up bipap , pulse ox probe change and I don't know what is going on. She says she is fine every time it wakes her up too. Right now she is sleeping off bipap 3 feet from me. Her O2 level is 98 and her heart rate is 72. She is sleeping so well. No alarms off bipap. What is going on?? This has been going on for days. We sent her bipap in to be fixed and have been using the back up and still we are having issues. Is that one not working right also?
I will watch the pulse ox and think all is well then soon as I start dozing off there it goes off again ...... buzzzzzzzzzzzzz. Its like you have been zapped in your brain. zzzzzzzz (chill up my spine just thinking about it) . Then when I did everything I can think of and finally got her situated turned her over again I had my eye on the pulse ox I happened to notice her G-tube was clogged (she is vented). I had to get the clog out and then try to get some sleep. Then, I was worried her gtube was going to get clogged again and it did !!! OMG!!!! I got up again and took and cut the end off a q-tip and cleaned out her G-tube and sure enough there was something lodged in there. She had alarmed 5 times last night for a second then backed up g-tube. Its like she is 2 years old again. I am not used to this. It all started with the bipap messing up after she had gotten sick.
She is no longer having illness related issues but what the heck is going on? I need some sleep. She is also not sleeping because of it.
Her O2 and heart rate are totally back to base line. Treatments are going smooth. She says she is not sick and feels fine.
Pray I get some sleep tonight!!

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