Today was semi-stable compared to recent days. Elizabeth had a little episode this morning where her saturation dropped, but was able to recover pretty quick. They did a broncospy on her lungs to see if they could determine where the blood what coming from in her trach. Her left lung shows some irritation, but no active bleeding so they think it just goes to show how "sick" her lungs are. She still has the chest tube in and it is still leaking air. Her oxygen has been able to wean down to 60% and they weaned her nitric down to 10ppm. She seems comfortable with the sedation/paralyzing meds and has only needed a few extra doses today.
Now for the BIG news of the day! We had our conference call with Dr Mallory at Texas Children's Hospital along with one of the PICU Dr, and our Pulmonlogist. We basically went over the requirements for trasporting Elizabeth and asked some questions about their transplant program. Dr Mallory stated that Elizabeth can be transported as is, with the chest tube, nitric, vent and all. He would recommed she be stable for 72 hours and that we could be in Texas as early as next week (pending our desire to transfer there and insurance approval). He felt that Elizabeth is a good candidate for transplant and that it is very likely that she will be listed after evaluation. He said that most of her testing for evaluation has already been completed and the process would only take a couple days and then be presented to a medical review board for vote. Once the review board vote yes, she will be listed and THE WAIT begins.
Talk about a lot to process, I know we have been headed towards this route for a while. We have known since birth that Elizabeth may end up needing a transplant but hoped and prayed she would not. Now that we are here, I am hoping and praying that they will list here. Based on the events of the past month, I truly in my heart feel this is our only option at giving her a chance at a somewhat normal and happy life ~ possibly FREE from all tubes! I can not even imagine what it would be like to hold her without her being attached to a machine, to see her breath easily and not struggle. That is now my new dream!! No more oxygen, ventilator, trach! I realize transplant life isnt easy either, there will be complications, medicaitons, and continued hospital visits for the rest of her life, but she will be alive and that is all that matters!
I know we still have to get approved to be listed, and am trying not to get my hopes up (just in case).
I will update more later as we find out anything. I also have some interesting news to share about a family I found that has a 3 year old with Elizabeths SAME condition!!
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