Friday, November 19, 2010

Friday, November 19, 2010 1:41 PM, CST

111910~ EEG monitoring Elizabeth's brain @ Vanderbilt. Stopped paralyzing today and loving her pacifier The Infectious Disease Team came by again today and they think that Elizabeth has Pneuomia and that is what has caused all of her distress. Which we have been told from the beginning that if she ever got sick it would be very hard on her, but  we never imagined it would be this bad. So the upside is that she is responding to the treatment-anitibiotics. They plan to watch and make sure nothing grows from her blood cultures since she could still have an infection there but they are planning to switch her antibiotics tomorrow. They said it would take about 10-14 days to treat if nothing else grows from her cultures and she continues to respond to the medications.
Her oxygen is back up to 60% put her nitric is down to 4ppm and her ventilator setting have been adjusted and turned down some, so that is all headed in the right direction.
The echo done on her heart here shows NO CHANGES since her last one in September, which is good. At least we know her heart has not  gotten worse. But it hasnt gotten better either.
Neurology also came by today and they want to start treating Elizabeth with anti-seizure medication. They still are not sure that she has had any seizures but are concerned that her condition may cause them and right now that would be very bad for her. So she will start the medication and be reevaluated once she has recovered from her respirotry issues. We are still waiting on the results from the EEG on her brain.
An NJ tube was placed today(tube from her nose into her intestines) so they can start feeding her again. They plan to use it and her Gtube in her stomach but this way it will be likely for her to aspirate and reflux. Her stomach issues will be evaluated more but she has to start being fed first to get her stomach to "wake up" since she hasnt eaten in a few days. Right now they are having problems making sure the tube is placed correctly so we will see how that goes, it may be later today before she starts getting fed.
Its so crazy to think how she goes from one extreme to another. She was doing so well and then got so sick and now has started recovering pretty quickly. We are thankful for the quick recovery but really concerned about how quickly her status can change!! We do have good news about our home nursing, we are approved for 24 hr care (apparently our home health company billed incorrectly in the first place and we never actually lost coverage!!-needless to say we are looking into new a company). So we should have that all lined up before we get outta here this time.

As the holidays are approaching I would like to encourage everyone who reads our posts, to think about donating time, food, or money to your local Ronald Mcdonald House or local Children's Hospital. I know lots of families including ours that have had to use the house or room  for lodging/snacks/just a place to get away from the hospital room. 

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