Tuesday, December 21, 2010

Tuesday, December 21, 2010 6:42 PM, CST

Elizabeth was seen by neurology and had another EEG on her brain to check for seizures, nothing was found there. So she can add their "approval" along with that of genetics, cardiology, ENT, pulmonology and physical therapy. She had a ultrasound of her liver done today, which appeared normal but her gallbladder had some slug in it, but they think its related to not feeding her in her stomach so no real concern right now. She had a foley catheter placed this morning to do a 24 hour urine collection as part of the transplant evaluation. So basically we are done with evaluation except for the biggest part, seeing the surgeon! They were supposed to meet us today but were busy, so we are hoping for the morning so that she can get voted on tomorrow. We were told they plan to discuss her at the meeting regardless but she can not be listed until the surgeon gives their approval. So hoping they make it by bright and early.
She continued to have a crazy night last night, her saturations ranging from 70s-100 but she was always able to recover with additional sedation and being bagged. She had a few episodes today as well. All of her sedation medicine drips were increased. And I think I forgot to mention on Saturday, she was put back on the paralyzing medications. She was unable to maintain her saturations and her level of aggitation was too much without it, so it seems like she will have to remain paralyzed and sedated until transplant, unless some major improvements happen. They have tried to wean her oxygen but the lowest they have been able to get to is 90 and she still requires 100% the majority of the time. Again, this all seems related to the infections she has again. She had two different bacterias growing from her trach culture, one is the same as she had a Vanderbilt and the other is a new one. They have added an additional antibiotic, so now she is on 3. We were told these infections will not affect her ability to have a transplant. The only other change for today was that they are trying to wean her steroids to a much smaller dose. I voiced concern over this, since in the past this has caused her issues. But Dr Mallory assured me he will be keeping a close eye on it, but she needs less steroids to help with her healing after surgery. Also, she is again not tolerating her feedings. They had been able to get her to full feedings at Vanderbilt before we left but stopped feeding her for transport here. And as soon as they restarted them here, her belly got huge and bloated looking again. So they are slowly trying to start them and get her digestive system working, so for now she is getting small amounts of formula and TPN.  We are also still trying to get her feeding tube issue addressed, hopefully we will be able to start using the feeding tube in her stomach again soon.
Thats basically it. I walked a couple blocks to get dinner tonight and got a chance to enjoy the nice weather here :)
I feel like I am living in daze right now, I really want her to get on the transplant list but I really worry about how she will do when transplant time comes. Its a strange feeling, knowing that we have to do this or we will lose her, and at the same time not knowing how this will affect her and the possiblity we may still lose her. I really want this to be a new beginning for Elizabeth. She has fought so hard and been through so much, I just have to believe that she will and can keep fighting. If she can have even one day of normal then all of the sadness, worry, and tears will be well worth it. The transplant team keeps telling us this is all a leap of faith, which basically sums it up.

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