Yesterday I drove back up to Denver children's hospital. Abigail was going there about her oxygen. Her heart doctor wants her off oxygen asap to help her heart heal, primary doctor does not until acid reflex is done. So we got referred to another specialist. The doctor was really nice. She explained that the heart and acid reflex are not helping her lungs. Yes the acid reflex needs to go away before oxygen come off. She chokes and throws up to much which is a risk for aspirating.
New plan per the new doctor, waiting federal for a home pulse ox machine. During the day she will be hooked up and off oxygen unless numbers are to low or heart rate too high. At nights she will be on oxygen no matter what. We are looking at 1-2 months hopefully and then off completely.
She is taking two naps in the am. Normally a rest for an hour while I run. When we get home she will sleep for an hour. Wake eat and sleep for two. We are slowly making progress.
2 comments:
She's too sweet! She's getting plenty of beauty rest. Glad to hear the news and will be praying.
Forward progress is what counts. These are beautiful pictures :) Two months will go quickly…hang in there!
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