Another Bronch

Last night was a hard night. Because she's going through withdrawal she slept about 2 hrs and stared at the ceiling the rest of the night. She also has been having swelling which is causing her to work hard to breathe. They tried something called "heliax" (?sp) and it didn't help. It's basically oxygen mixed with helium and because of it's density it's suppose to deliver oxygen easier even with swelling.

It was frustrating because since yesterday I felt she should get steroids because she was sounding striderous (loud when breathing) but it slows down healing and weakens the immune system so they did not want too. I told the nurse it seemed odd that they would risk her airway swelling and closing and requiring a breathing tube over steroids. They kept telling me she was "moving air fine" so she didn't seem to need the steroids. Well by the morning her nostrils were flaring and she was louder. ENT group came in, did not look happy that she looked and sounded the way she did and ordered steroids right away. I know I shouldn't say, "Told you so" or "Mother knows best" but that could have been avoided. She's already had two steroid treatments and a dose through IV since they came in this morning. So they've decided to do another bronch (put a camera in) after 3pm today.

Risks Today:
~Requiring the breathing tube again. With the bronch she will go to the OR and be under anesthesia. They are going to try not to put the breathing tube back in, as it would cause more irritation and swelling, but if she can't breath on her own under anesthesia, they will have too. ~The stent (cartilage put in airway) could have collapsed. They say if it collapsed she would sound a lot louder than she does now. However, she was drinking for a bottle on Tuesday after the tube came out. By yesterday morning she was clamping her mouth shut and gagging when anything is given to her to swallow. She started drooling a lot today. They say this is all expected, but when you feel you know your baby, you can't help but question everything.

Ari also has had a bump on the back, side of her head. It's very red. We think it was the beginnings of a bed sore but it hasn't gotten better and she's been off of it. On the other hand her withdrawal symptoms have improved. She not as shaky and has more control over her movement. She's been a little sweaty and not interacting yet. She's not able to process her thoughts and feelings. She got stuck three times yesterday for an IV and just laid there in a gaze.

I feel like I've just written my list of worries and complaints, but hope you can all take it as my prayer requests. I feel all over the place today and I'm sure lack of sleep has a lot to do with it. So continued prayer is needed. I feel like I'm moving into a question God mode and I don't want to be there. I know God is sovereign and His plans are perfect. I will end with this, my comfort has been that she looks comfortable through all this. She hasn't cried, she's smiled a few times, but just looks comfortable and for that I'm so grateful.