Thursday, June 30, 2011

Busy Week

Elizabeth has had a very busy week!! She had another halter monitor done on Monday to check her heart and the meds that she is on for the abnormal heart rate she was having.  She has been able to stay off of oxygen except during nap time. On Wednesday she had the tubes put in her ears and had the granulation tissue removed from her airway. She also had her vision exam on Wednesday, which showed that her eyes are healthy. But she still is not tracking things well with her eyes, so we will just have to wait and see how she progresses. And then today, we downsized her trach again from a 3.5 to  a 3.0. We also tried capping her trach, which means we tried to make her totally use her airway to breath without the pressure the passy muir valve gives. She did well with the smaller trach, but did not tolerate the cap on her trach. She is still on the ventilator at night, but we will be working towards capping her all the time and hopefully will be able to get rid of it soon. When she can be capped for 48 hours they will remove her trach. She is slowly but surely working towards that goal and we are SO thankful!
Its amazing to see her doing so well despite the changes that have occured with her brain. She is definately "different" than she was before she got so sick in November. And we wont really have an idea of how much her brain was affected by the atrophy, and we still dont have a reason why or what the future holds. But we will continue to work with her in therapy and do the best that we can to make sure she has every opportunity to thrive.
Tired Baby after a long week!

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