I've often wondered how long you can stare at a computer screen before you go mad. Hopefully, I'll never find out. Declan's been attached to an EEG with the output on the screen as shown, (and a little camera to capture the action). These images are sent to "the Cave" as the nurses call it, where a number of neurologists stare at various patient's screens all day, monitoring the endless stream of waves, hoping to identify seizures. I don't know how they can do it. Declan had a number of non-clinical seizures (only visible by the charts on the screen) last night, but with the adjustments in medication, we think they have almost stopped. (Only 2 in the last 12 hours.) We hope to get these stopped altogether tomorrow. So a slight victory there.
On a very positive note, the therapists came in to work with Declan on feeding out of a bottle. (He has not had a bottle at all in his little lifetime). She was wonderful: very kind and soothing through the process. She gave him rave reviews about his "sucking level". After 15cc's he was zonked; but received a very enthusiastic "thumbs up" from the therapist. He gets all of his nutrition through his feeding tube; so this is just for developmental purposes. After feeling so down last night, it was nice to wake up today with a clean slate and experience some small victories. We will take them in whatever size or form they come!
I'm glad he's becoming a good little sucker... ;)
ReplyDeleteI'm also glad you guys are trying to focus on the positives. I hope they have a good social worker there for you guys.
Mik & Tammy- I'm constantly amazed at your example going through this hard time. You are both such shining examples to me! You are your precious family are always in my thoughts. As I know others have expressed, I just wish I could be there with you..to give a shoulder, a hand to hold, or just simply to be there. We love you and are rooting for little Declan to get through this. May you have peace and comfort in your hearts through this phase of life.. �� Dawn
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