Monday, December 20, 2010

Monday, December 20, 2010 8:50 PM, CST

First off, I wanted to say how grateful I am to the nurses/doctors/social workers and our awesome case manager at Vanderbilt and TC Thompson. I know a lot of times I only post the negative things or bad experiences we have. But there are many times that these people have went above and beyond what is required of them. They have cared for Elizabeth as if she were there own, and listened and worked with Matt and I to ensure we were making the best possible decisions for Elizabeth. We have been very fortunate to have met some amazing people who have helped and supported us during the most difficult days. If it were not for these people working so hard to keep Elizabeth we would have never made it as far as we have. And I just hope that they all know how much we appreciate them!

So now on to news in Texas!!  Elizabeth started off the day with a high heart rate and low saturation. And guess what….Another infection. Her white blood cell count had doubled since yesterday, so they did cultures of her trach and blood. She was started on 2 different antibiotics. And didn’t spike a fever until later this afternoon, but that’s common for her since her immune system is suppressed. So for now she is on 100% oxygen again, and her saturations are ranging from 87-91. For now they are ok with that since we know the cause, hopefully when these meds kick in she will be able to wean back down on her oxygen.

To share some things I learned about evaluation. Bascially transplant evaluation is a time for the doctors to find reasons to say No. They are looking for any reason why a “resource” AKA lung should not be “wasted” on a child who would not have a normal life if given the chance. We are confident that Elizabeth will pass all the tests, but the chance they could say no scares us!

We met with Dr Mallory today, he is the transplant pulmonologist and the man who thinks Elizabeth is a good candidate. He wants to get this evaluation done within 48 hrs to meet the Wed meeting! We LIKE HIM A LOT!! Granted that is just a goal and there is lots to get done so we will see, but he is pushing so we hope it happens. He explained all the above to us about the evaluations being done and he warned us  the surgeon will be our biggest obstacle. The surgeon will be the one who really tries to find and give reasons to say no to transplant.

Also, I dont think I mentioned on here before. But when I spoke to Lucy's mom (the other girl who has the same diagnose as Elizabeth) she told me I should ask about her IGG (immuoglobulin) level. Her daughter had hers checked prior to transplant, when she kept getting infections and was found to be extremely low. This basically means she has an immune defiency. We requested Elizabeth be checked while she was at Vanderbilt and was found to be low ~IMAGINE THAT. So we are thinking she will benefit greatly from getting IVIG (Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.) Vanderbilt had planned to give it but had to wait so that Texas could get all her pre-transplant blood work done, since IVIG will change her immunities and her blood make up. We have been adament about asking since we got here about getting it and today numerous Doctors today told us we needed to "wait and see" if she really needed it since its expensive and a rarity here apparently. Well Dr Mallory immediatly told them she needed it and needless to say she just finished her getting her first IVIG dose ~ told ya I like him :)

Today, she was seen by ENT, Genetics, and had an echo done. The Social worker came by and we were referred to and got a room at the Ronald Mcdonald house.  So that is good news, the house is about a mile from here. We have been getting a sleep room at the hospital the past few nights, and taking turns sleeping while the other sits up or sleeps in Elizabeth’s room, in the very uncomfortable chair. The sleep rooms are similar to Vanderbilt. You sign up in the morning and find out in the evening if you got it, you get to use it from 9pm-11am and then turn your key back in. The sleep rooms can be used during the day for naps/showers if you sign up in the morning. So now that we have a room at the house, one of us will sleep there at night and the other will stay in Elizabeth’s room and during the day the other will get a nap room or go to the house for a break.    We can have mail sent to the house, I will post our address when I get a chance to verify it with them.

Hoping for an busier day tomorrow. Doesn’t feel like a lot got accomplished today. But for a hospital day I guess alot really did happen. Hoping that her infection goes away quickly and she can maintain decent saturations.

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