Well we've tried the new mask for about a week now. So far I'm not impressed and worry more than I did with the full face. But I want to give it a chance and follow doctors orders.
We did the first night with the pulse ox reader and I took the SD card down to the home care facility so they could send the information over to the doctor. We have her on a new c-pap machine that will adjust it's settings automatically as her body needs it. We have her set at a max of 10 for her pressure and so far she hasn't gone any lower than 9.9. We also started with her oxygen at 2.
Since coming home from the hospital dad and I haven't slept more than 2 hours each night. We're doing shifts checking on her and running down the hall every time the alarms go off. We try not to wake her but some times you just can't help it.
I have called Pulmonary 3 times now regarding Haven. Even with a high pressure and oxygen she consistently desats to the low 80's constantly throughout the night. He agreed to put her oxygen up to 2.5 and we were going to try the full face mask again.
After 2 hours on the full face mask and Haven's non-stop coughing we put her back on the nasal mask. We spent the next 3 nights not sleeping. I just talked to the doctor again today and in hopes of keeping her SPO2 levels up and dad/me sleeping she has been adjusted to a level 14 pressure and oxygen level of 3.
So we will see what happens tonight…………...
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I hate this for you all Misty. Poor Haven. Reagann was on bipap for about a month before they found her chylothorax and she never could adjust to the mask. No sleeping SUCKS. Have you talked to Paz? I wonder what this means for the treatment :( Always thinking of you guys.
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