Apparently one of the nurses from the weekend felt strongly that Matt and I were close to our "breaking point" and requested that the Transplant Team arrange a meeting with us. So today we had a meeting with the team, our nurse, the ICU Dr, and the ICU Dr that is now Elizabeth's primary. It was a good opportunity to discuss everything and ensure everyone was on the same page as far as her care. And allowed us to vent some of our frustrations and concerns. Even though we had pretty much resolved our concerns by getting a primary Dr and nurse schedule, I think it helped that Transplant Team is aware of the issues we were having. We are now going to have weekly meetings to be sure that everyone is on the same page.
Elizabeth had a pretty stable day, her oxygen was turned down from 55 to 50% and her saturations are still 95-100. So the infection doesnt seem to be really bad or affecting her respirtory system. But so far the only culture that has grown anything is from her trach. It is still growing so it hasnt been determined what exactly the infection is yet. But due to her history of different stuff, she was started on IV antibiotics that has helped in the past. She had a few fevers this morning but has been ok this afternoon/evening. Dr Mallory with transplant, said he does not feel that this would affect transplant at this time. He says based on how she is doing he doesnt think the infection is too concerning. He does want her to get a 2nd FLU shot once this infection is cleared up. And she is due again for her RSV vaccination on Feb 5th. Poor kid still has to deal with the "regular kid" stuff on top of all the "sick kid" stuff. She got her 12 month vaccinations last week ~ NO FUN!! But we need to try and get her as much immunity as possible prior to transplant, because after she will basically have none.
Also during physical therapy they have started trying to let her sit in a reclined chair, so that she isnt laying down flat all the time. We are still apprehensive about it since she has to be moved so much and her vent setting being so high. But transplant team recommended it so we are gonig with it for now. She is still so drugged she doesnt open her eyes or anything, so its basically us putting her in a chair and her just sleeping there for 20 mins.
Anyway~ Still waiting for lungs and trying to stay sane.. Thats about it.