Saturday morning

Wow. There's a lot to catch up on. Here's the short version- Wednesday morning she was gagging and had her TP tube come out her mouth, so we had to pull it out. We spent the whole day "wasting time" trying to find someone locally who could put the thing back in (the hospital had told us when it comes out to just call our pediatrician or go to the ED... yeah right.) and around 5pm when we realized it wasn't happening (and along with concerns about her breathing rate and effort getting worse) we headed for NC. She was having issues with her O2 saturation declining as well, and when we got to the ED they put her on blow-by O2 which brought her sats back up to good numbers. We were admitted that night and by the following morning the blow-by wasn't cutting it any more. They put her on a nasal cannula and that helped. Thursday afternoon they took her down to scope her and see what the problem was. Apparently when they started to put her under, her O2 sats dropped dramatically and they had to bag her for several minutes before she started breathing again and oxygenating better. During the scoping they found some thicker mucous, but nothing else. No crusts or casts, and the patch still looks like it did before- it is open but compressed. It is not completely collapsing at rest. They thought it was just mucous she hadn't been able to clear, and they suctioned it out. They said that below the patch, the mainstem bronchi were clear. She was not stable enough afterwards to allow extubation, so she returned to the PICU intubated again. Each time they let her get light, she breathes really hard and gets agitated, so they keep delaying extubation. On Friday she was having more trouble exhaling, so the pulmonologist came to scope her in the room. He didn't find any more significant secretions to remove. Just a couple hours later, she suddenly had no breath sounds in her chest and her O2 saturation dropped into the 40s before they were able to get things going again. They think she may have mobilized a bit of mucous and it was obstructing her. This morning she's holding steady and they're getting better-looking frothy white secretions out rather than the slightly tan more opaque stuff they were getting yesterday. They had swabbed her to test for respiratory infection but it will be a few days before we get the results. They did do some testing from the mucous they got out in the OR and the gram stain showed 1+ gram positive rods and 1+ white blood cells. The culture has not grown anything. She has not yet been put on any antibiotics. We feel like she has taken a big step back and are getting more and more worried. We're hoping to talk to her doctors today about the potential for transferring her to Cincinnatti where Dr. Rutter is, since he would be the one to do a revision surgery if it is indicated. We'll try to keep updating now that we have our computer with us.