In need of answers...

I have prayed that we would get into a pulmonary doctor soon to try to understand these changes going on with Annabel. We will be traveling to Houston on Wednesday to see the Pulmonary Dr. My biggest prayer for now is that I will come away with some sort of answer or reason for what is going on. I think this would help my nerves when these are going on if I knew if this was due to infection, structural changes, aspiration or just this Trisomy thing. She has had a few days and I thought things were improving. Sometimes I see one thing improve and then yet something else surfaces. We had a few days were we saw a decrease in the need for oxygen and that she was having less spells or episodes. But her spells are becoming more intense. Today she needed more oxygen and this evening earlier she had a fairly bad spell. We have begun to see blood in her mouth when she has the more intense spells. I am up tonight because already she had desated into the low 60's several times. She is taking much longer to get into the safe range. She has now begun to wake and become very scared. She is showing obvious sign of struggling when she stirs and the sats are still low. Normally, some people say that they would go to the hospital but with the oxygen here I don't think there is anything they can do for her there. She has been off the antibiotic for about 3 or 4 days now and I do think she is showing early sign that the UTI is coming back. This would be seven antibiotics within less than two months including two Rocephin shots.
I do know that so many of you think of Annabel so often and pray for her. If you think of her in the next couple days, please pray that we will get some direction into maybe the cause of these spells.