Just to kinda catch up on happened yesterday. Bascially Elizabeths oxygen satruation was sitting in the 70s/80s and she was not happy at all, of course this was also during the time when the surgeon decided to come by and see her. She had her 7th blood transfusion, was given numerous types of meds to try and get her to oxgenate better. And of course they saw a new air pocket in one of her lungs, but not in an area where they could easily out a chest tube in, so we wait and see how it goes with that. She continued to have a crappy morning yesterday and then Dr Mallory came in and made some major vent changes. She was finally in the 90s, her heart rate was much lower and they have been able to wean the amount of oxygen she was on down from 100% to 60-65%. She stayed stable all night last night. The down fall of this is when I say he made major changes. She is now on exteremely high pressure support and her lungs are very over inflated to ensure she is able to oxygenate. This is just showing how sick her lungs really are and that they are not getting better. So even though I say she is doing better, its all relative to the situation.... Better that she's not sitting with an oxygen saturation of 70 on 100% but still really crappy that basically she is on the verge of not being able to go up any on the ventilator settings.
So bascially the surgeon did not feel Elizabeth is a good candidate at this time. He thinks she needs to get rid of her infections, and that she needs to stop being paralazyed. Plus the fact that he saw her on the worst possible day since we have been here didnt help her situation any! He wants to be sure he is not doing surgery on a kid who has a poor chance of coming out of the surgery and doing well. Needless to say I was very disappointed and upset about this and the fact that I felt it was not explained to us yesterday did not help. I asked alot of questions today about all of this and I feel that we now have a "game plan" to get her to approved.
After changing all of her vent settings yesterday they gave her the night to chill out and this morning STOPPED paralayzing her. She has done Ok with it most of the day as long as they stay on top of her sedation when she starts getting aggitated. This is the longest she has been able to stay off of it since mid November. Fingers crossed that she continues to do ok with it. IF she needs to be paralayzed, its not a total deal breaker for transplant, but they need to see for themselves that she is still able to move and function. Her steroids also need to be weaned down, since they affect her ability to heal after surgery. They were attempting to wean them and after her epsidoe yesterday, the decided to do weekly pulse doses instead of daily doses. The issue of the infections...She is now on 2 IV antibiotics, 1 oral antibiotic, and 1 inhaled antibiotic. The plan is to get her infection cleared up and keep her on the inhaled antibiotic until transplant. They are monitoring bloodwork that shows inflammation in her body, they check this number Mon, Wed, and Fri. So it will be checked tomorrow morning and if it is significantly lower, and trending down then that is a good indicator that she is improving. So if she can stay off the paraliytic and this number in her bloodwork goes down we can hope she will get listed next week-maybe.
I should have known nothing would be easy for her, and this process is no exception!! Hopefully one day soon, she will get a break. Her status changes from one minute to the next and it's frustrating to watch and not be able to do anything! Even when she gets listed we still have a wait ahead of us. She could be waiting for new lungs for months, and at any time if she becomes sick or unstable she can be removed from the list. I am stressing out right now knowing how hard it is just to get on the list, let alone how we will manage to keep her on it once she is listed!!
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