Elizabeth did well over the weekend with the trach collar, extending her times on it. But her CO2 levels have been creeping up. So we aren't sure if its related to her doing too much work, and needing more support from the ventilator, or if there is something maybe going on with the lungs. Her CO2 levels have been within the normal range since transplant, so they are leaning more towards her just needing more time on the vent. Which is not what we want to hear. I cant help but think we are getting in that same rut as before, "just give her time, she will get better". I just hope that they are right. Needless to say we are disappointed that she was making so much progress, and we maybe we pushed her too hard. She is tolerating her feeding thru her gtube instead of the jtube, which means her stomach is getting used to having food in it. So that will hopefully help as we try to transition her to eating normally, which will take a long time to do.
She had her first "outing" yesterday. As part of PT we put her in a chair in a red wagon and rolled her around the hallway. She was on the trach collar, which made life SO much easier than being on the vent. She slept the whole time though. But we can start taking her out more often for these trips, if she tolerates it. Hoping the next time she will be more awake.
Hoping for progress, and good news the rest of this week. I know we need to be prepared for the continued highs and lows. But its so hard to deal with sometimes. Our reason for doing this was so she could be happy, healthy, and "normal". We are so scared that she is going to get stuck on this ventilator, and that is NOT the life we want for her. Please pray that she will have the strength and her new lungs will work well enough to not need it!