Transfer to Cincinnanti

I apologize in advance if my lack of posting had anyone worried, I have gotten a lot of texts recently. The last few days have been beyond exhausting and worrisome for us.  For those who haven't heard on Monday, Elizabeth appeared to be getting a bit worse. After talking to her transplant team Matt and I decided that we would feel more comfortable with her being with  the her team in case she were to get sicker or needed to be checked or treated for rejection. 

Matt, Charlotte and his dad & step mom all drove up and were here before Elizabeth and I arrived. Elizabeth and I flew out of Chattanooga around 2/230am on Tuesday morning.  It took a while for transport team to get her set up on their equipment. I did get a bit scared while enroute from our home hospital to the airport the Transport Team ran out of oxygen. The ambulance had extra tanks, and the team had to bag here with an oxygen tank to keep her oxygen saturation up.  As a police officer, I am used to riding in a vehicle with lights and sirens. But when its your child in the back and your not sure if she's going to have enough oxygen to make it to your next location, its a whole different story! Thankfully we made it to the plane and they were able to get her transferred onto the oxygen inside of it quickly. She did really well on the flight. Once we got to Cincinnati around 3am the PICU team and our Transplant Team were all waiting for her and us. We have been really impressed here with the care she has gotten and are grateful to feel we made the right choice for her.

Once she was settled they re-cultured everything and did more lab work just have their own records her. She has been able to maintain her oxygen levels and has not required any extra support besides the ventilator and sedation. Her sedation was increased when we arrived to make sure she is comfortable and resting. They have also added more meds to try and get the extra fluid off of her. Transplant felt that another bronchosocpy needed to be done, and also a lung biopsy so that they could determine if she has underlying rejection. She had the bronch/biopsy yesterday and thankfully tolerated the procedure well. We should have those results later tonight/tomorrow.  We are praying she is not in rejection, and that this illness won't set her up it. The Dr did say when he was looking at her lungs they were full of thick mucous from the pneumonia/infection. He was able to remove alot of it and she is now starting airway clearance therapy to help loosen some of that up. Her oxygen requirement has went down to 55% from being on 70-90% before we got here. So we are hopeful that she is really improving and its just taken getting some of that junk out of her lungs and getting fluid off for her to start improving. We still worry about rejection, and as a precaution they started treating her with a 3 day round of high dose steroids that are usually given when someone is suspected of being in rejection. She will get her 3rd dose today. And that may also be what is helping her right now too. So for now the plan is to continue to wean the ventilator until she can come off of it. Start the percussion therapy to loosen up more of the junk in her lungs. Wait for the biopsy results to know for sure about rejection. Starting her feedings back today. And lots of prayers and waiting for our precious girl to get better. She a fighter for sure!