Thursday, January 20, 2011

Friday, January 21, 2011 12:05 AM, CST

The decision was made to adjust her sedation meds again, we will see how that works out for her. They increased them a little and have decided to rotate her as needed meds between 3 different, that way she doesnt get used to the same one all the time.  We also have asked that one Dr be assigned as primary so that as the Drs rotate, her care doesnt have to get changed with every new person who has a new idea. Its good to have new "eyes and ideas" but at the same time, we need a plan. Right now surviving is the main goal until transplant, and if they keep messing with things they could cause her to have a major set back. We just need to be sure all the changes that are made are necessary and the best option, not just being done because they feel the need to do something. Sometimes nothing is best thing to do, and in the case of her ventilator and oxgen settings, thats is definately the case. And its looking more and more like that is the case for her sedation. Find a stable point and let it be. And as of today, they have decided that listening to us regarding her feeding schedule is the best option, so they will slowly increase her feedings instead of pushing her. I wish they would have just called Vanderbilt, they could have told them the same thing we have been telling them this whole time. I think the ICU, transplant, and pulmonology team gets our frustration after today and are trying to ensure that everyone is on the same page.
She was calm and awake alot today and didnt have a crying/sleepless spell until tonight around 8pm. Not sure whats going on with that, but she eventually calmed down, after getting a dose of ALL meds available including tylenol. Hopefully it will get better as her medication schedule gets worked out, and she gets used to being awake. We are trying to work on getting a normal awake/sleep schedule for her. Keeping lights on, noises and stimulation during the day and calm, quiet at night.
Elizabeth got her 12 month vaccinations today. She did not get 2 of the normal 12 month shots since they are live. She cant get them because of the possiblitiy of getting an offer within the next 30 days (hopefully sooner than later). Her immune system will be suppressed and she would not be able to fight the live vaccinations. She did well with the shots, they gave her a dose of ketamine before and she slept through them. She has been more awake and opening her eyes alot. Physical therapy stops by almost everyday and trys to work with her to make sure she is moving as much as possible. And occupational therapy has also started doing oral therapy with her, where they make sure she is still trying to use her mouth, and face muscles. That way she will hopefully one day be able to get on track with eating normally. She still hasnt really taken her pacifier but we work with her alot on that.
   Other than that just continuing to wait.

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