I know I know you all will be shocked to hear.... another day of good and bad! She started the morning pretty good and then started waking up some when the nurse had to move her. Then "they" decided it would be a good idea to try and do an echo on her heart before she got back to a stable/chilled out state. (You would think they'd learn by now, Elizabeth does not like to be messed with, not sure who she gets that from ;) !!!). So again her saturations dropped into the 70s and she was back up to needing 100% oxygen. I am beyond aggravated because we tell them EVERYDAY. They had to paralyze her and give 4 different sedation meds on top of her drips to get her calmed down and her numbers back to normal. They also started adding methadone/ativan today to try and get her prepared to start weaning her morphine/versed drips. When they gave her methadone/ativan doses today on top of all her other sedation meds, she seemed to respond well and has been resting better since then. Adding or changing up the meds seems to help since she is so used to the others she is one. She is still getting the morphine/versed drips, as needed doses of morphine, versed, penabarb, and chloryl hydrate (forgvie my spelling, this thing doesnt do spell check and I am lazy today) and today adding the methadone and ativan.
The only new News today is that our main pulmonologist came by and told us he was sending the last of the info Texas needed today. And that we will plan to sit down later this week once Texas makes a decision and discuss transfer. He thinks it would be best to transfer from Vanderbilt to Texas and get her evaluated. Bascially our options from what I have been told and read (this could all change so dont quote me). If approved for evaluation, Elizabeth will go to Texas and have some tests done, we will talk extensively about the benefits/risks, then if they feel she needs a transplant and we agree to it, she will either be put on a wait list or be on the active list. Wait list means shes on the list but does not need a transplant right away and will be activated when they feel she needs it. (basically if she continues to improve and can become stable for any length of time). If she is put on the active list we will begin "the wait" for a match. Which would mean living in Houston until a match is found, then transplant surgery/recovery, then living in Houston after until she is cleared to come home. So we are talking an unknown timeframe, based on their website average wait time for a match is 2-8 months.
There is still a possiblity that she does not need a transplant, and she can/may improve on her own. But we along with the drs agree that we keep increasing interventions for her and she still requires more and more help. It would be better for us to prepare for transplant and not need it then to wait and need it emergantly and not be able to get it.
Below is a website for more info on the progam at Texas. Copy and paste it in your browser if you want to read more.
www.texaschildrens.org/carecenters/Lung_Transplant/default.aspx
Sooooo.....lots to think about and lots to be scared about. Please continue to pray for her and all the other sick kids. This is scary stuff and I hate knowing so many other families are going through this too.
No comments:
Post a Comment