Still continuing to pray for Matthew. He is doing amazingly well with his feeds, up to 18mls/hour and after tonight his IV feedings will be discontinued. I am so happy to see he is doing so much better in this area, it has been a long time coming. However I feel like just when we fix one issue another one arises. I am very concerned about his level of alertness, for about 10 days now he has been very sleepy, and pretty much non responsive. This occurred around the time of a medication change so I have been trying to figure out if that is what has caused this. Right now we dont have an answer, opinions vary from day to day depending on which doctor is on and I am getting frustrated feeling like no one is really doing anything to figure out what is wrong. They keep brushing it off telling me babies in the NICU can be this way where they are always tired and sleepy or it could be that his seizures meds are not 100% effective and so he is tired from the seizures that could be occurring. Well I hate to be a nuisance but this is NOT normal for Matthew. He was NOT constantly sleepy when he was was having seizures, before they put him on anti seizure medication so why would he become sleepy from that now. Something is wrong, I just know it in my heart, I dont know exactly what but I wish they would make some effort to figure it out. I want my little boy back, awake and responsive. This was today, he slept through a bath and his exercises with his favorite physical therapist.
Posted on: Fri, 16 Jan 2015 22:50:58 +0000
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