Lets just say things went from bad to worse. Elizabeth continued to have bad "spells" of her saturation dropping. Yesterday morning was her worst one this stay. She started gagging, coughing, and trying to throw up. Her saturation dropped down into the 60s and she was VERY blue. She was fighting so hard to breath that she was causing her anxiety which was making her even more upset and uncontrollable. Her heartrate began dropping and they moved the crash cart into her room (we have NEVER seen that happen with her before). I was afraid that we were going to lose her. Her nitric was turned up to 40 ppm and they started IV's to give her fentanyal and versed to sedate her and threw around the idea of paralyzing her as well. She was switched to the hospital ventilator and put on higher setting so that the ventilator could help her breath.
The doctor told me she felt we needed to be transferred to another hospital that offered ECMO (where her blood goes through a machine to be oxgeninated), just in case ELizabeth continued to decline that was the only way she could be helped. TC Thompson does not have ECMO and if she got worse they would not be able to help her. She finally somewhat stabilized yesterday and Vanderbilt was contacted to LifeFlight her back to Nashville. They got here last night to transport and she dropped down into the 40s and was unable to recover, she stayed very unstable for hours and it was determined to risky to transport her, so we stayed at TC Thompson and she was eventaully able to be stabilized.
She had another really bad episode this morning where she again dropped into the 40s and was not recovering. Her trach was changed to a cuffed one to reduced the large leak she had around her trach and that seemed to help. Her trach was also plugged with gunk and that immediatley helped her breathing. They have continued to sedate her and a central line and art line were started today so that she has better access for giving meds and drawing blood. She was transitioned back to her home ventilator but still on higher settings and the ventilator is helping her breath more than it was before. She has done well with it and her nitric has been able to be weaned from 40 to 20.
We were afraid she would need ECMO and have to be transported on it so a hopsital in Michigan was contacted and they were willing to come and get her, but now that she is somewhat stable, it looks like the best option will be to get her to Vanderbilt tonight and go from there. They have ECMO available and if she ends up needing it we will be at a location to help her.
The thinking it that she may have aspirated during her gagging spell and it caused some type of puneomia, plus the infection she already were just too much for her body to handle right now. Hopefully we will see some improvement within the next few days. She will also be evaluated for her pulmonary hypertension again to see if that is possibly causing this.
I think the past few days have been the worst so far with the fear of losing Elizabeth. She has never had her saturation drop that low so many times and take so long to recover when she is getting the maximum amount of help. Please keep her in your prayers, she continues to fight and we will be here with her the whole way.
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