Wednesday we had Pediatric Day Hospital. We saw many specialists, did x-rays and blood work. She had a sillia biopsy (yep, a nose hair biopsy, did you know there was such a thing?). It involved taking what looked like a tiny bristled bottle brush and putting it up her nose then twisting it around in order to pull out nose hair and skin. They also suctioned fluid from her nose and fluid from her lungs to send for cultures. As you can imagine, Avigayil was not a fan.
Her PCO2 was "impressively high" again (not a good thing). It could be just because she is sick. We are waiting for the results of the rest of the tests. We should have them on Sunday.
Some changes were made to her feeding. The biggest change is that she no longer takes any food by mouth. She is feed exclusively PZ (through the tube in her nose). They also set her up to have a continuous feed at night. This is really for our benefit. Until now we had to get up every hour or two to deal with her feeding pump. (Although, since she has been sick and waking up vomiting all night I still haven't gotten much sleep).
We are waiting for appointments for a CT and a broncoscopy. Both will require anesthesia. They also have to repeat the nose hair biopsy since the results were not what they were hoping for.
The good news is that she does not have Cystic Fibrosis. Her sweat test came back negative.
Please keep her in your prayers and we will keep you updated.
Prayers are still coming in from Syracuse. I just add her to the list of my grandchildren for candles (plus a few times in between.) Shavua Tov.
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