Finally Lilys update from yesterday that I was to tired to post. It was a rough day full of unexpected things. Thankfully all the nurses and Doctors have been amazing about keeping us informed and explaining things well. Lilys neurologist came to see us yesterday and we discussed her jerks she has on occasion. I happened to have a video of it to show him. He believes they are actually seizures not just muscle related. I believe he called them short clonic seizures. Basically it still isnt harmful but we will try to treat them a little better now that we know they are seizures. Lilys swallow study did not go as we hoped. We found out she can only handle applesauce and pudding consistencies to eat/drink, anything thinner she will aspirate/choke on which makes her at a very high risk of aspiration pneumonia like this time. (However this time she got it from the rhinovirus she has and it caused her to throw up and she aspirated the vomit.) The Drs are highly recommending we put in a G-Tube (feeding tube in the belly). This came as a huge shock to us. As of now they are letting me attempt to thicken all of her drinks and spoon feed it to her. Thankfully her pureed food she is used to she will be able to continue to eat. However their concern is that she will not get enough fluids and get dehydrated. She will basically be eating most of the day in order to get enough calories. She is currently on a calorie count and they are watching her urine output. We are ok with her getting the G-tube if she needs it but we are just trying to exhaust all our options first. For those of you that dont already know this Lily has been diagnosed with Cerebral Palsy. (Basically it means she has brain damage that affects her muscles it is not degenerative and just helps us know how to better care for her.) Most kids with CP tend to need a G-Tube at some time. Her oxygen levels are still an issue as well. She is fine when she is awake but as she sleeps she has trouble. Other than that she is doing much better. And even slept great last night. :) They are expecting for her to be here until Monday at least. Please pray for her to continue to feel better, as well as peace of mind and wisdom on what to do about the G-tube.
Posted on: Sat, 02 Nov 2013 20:08:36 +0000
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