My last update I told you about a few tests and changes that were planned for Elizabeth. I kinda tried to break those things down for you below. Sorry if this post is a bit long.
First off Elizabeth had her MRI of her brain last week. Our main reason for having the MRI was because she has not be tracking things well with her eyes. The MRI was ordered to help us see if there was anything going on neurological that was affecting her vision. And they did find changes on it. Her brain appears to have had some cerebral atrophy. I have pasted the definition here: (Cerebral atrophy is a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls.) In Elizabeth's case it appears to be generalized meaning it appears as if her brain has shrunk some. They do not know the cause of this. In order to rule out lack of blood flow to her brain she had a CT angiogram done yesterday to check the vessels in her brain. Thankfully that test came back normal. So for now they are just going to monitor her. The Drs have said that this could have be caused by medications she has been on, or just being chronically ill. We still do not have answers regarding her vision, so we will just have to watch and see how she progresses. And we will continue to work on her development with PT and OT. We hate that she keeps having one issue after another. And that we dont really have an answer as to why this happened or what it means.
As for good news, she has been tolerating the passy muir valve and has increased her time to 8 hours as of yesterday. And was doing awesome with it. She has also started working on weight bearing exercises with physical therapy. She has been using a device that they strap her into that helps her stand. She has also been trying new baby food, and doing well with it.
Today in an effort to see how much she could tolerate, we downsized her trach. Matt and I changed it this morning around 930am to 1 size smaller, and she was on the passy muir valve with a goal of 12 hours today. She was very fussy and seemed super sleepy most of the day which started to concern us. Since the last time she was this way her CO2 level was extremely high. So we asked the nurse around 5pm to check her blood gas and told her we wanted her put back on the ventilator. As the nurse was getting the blood gas, Elizabeth started to turn blue and her oxygen saturation began dropping. Matt and I did an emergency trach change and put her old (bigger size) trach back in. And got her hooked back up to the ventilator. She recovered pretty quick, and we were able to get her calmed down. When the blood gas came back, her CO2 level was very high. Needless to say, this was pretty scary for us. It really took me back to how things were before transplant, and I NEVER want to go back to that. So tomorrow we will reevaluate our plan/goal for downsizing her trach. She just may not be ready to do it yet, but we can still continue using the passy muir.
The next "hurdle" for the week is her PH probe tomorrow. They will put a tube down her nose into esophagus and leave it there for 24 hours. It will measure the amount of reflux she has. Once we have these results we will discuss whether or not she needs surgery to redo the nissen fundoplication that she had done back in August, which is "supposed" to stop her from refluxing/vomiting. We are hoping that the results are good and she does not need another surgery.
I try not to get discouraged and just appreciate what we have. I know things could be ALOT worse and we are lucky for the progress she has made. It just frustrates me sometimes that she has to go through all of this. She deserves a break from bad news!! Hopefully she will continue to make lots of progress this week and we can get closer to getting out of the hospital.
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