Monday, October 8, 2012
Riding the Storm
Danny remains comfy during this hospitalization. Now if only he'd share his bed with his momma I might be able to say I've been comfy too, lol. I was able to start my new pain meds last night and it's too early to tell yet if they are going to work, but I'm hoping by the next day or two i'll get some relief. I have to say I'm not too impressed with the loopy feeling side effects that I've been feeling, so well see. I'll give them the benefit of the doubt but if I can't "adjust" soon then I'm not sure I will be staying on them. Danny is recovering from his illness pretty well. His numbers continue to trend back to "normal" levels. There is still no good reasons to why've had ALL of the issues he had when we came in were going on, Go Figure! I havent seen his baby blues much of the day :(. I'm hoping his trying to rest and let his system heal. The last 2 days he has been having more intense seizures or what we believe are seizures. He required many recovery meds, even more the he normally would get. So I'm wondering if the tiredness is from the meds snowing him. A Neurologist from here (well actually hes the head of Froedert Neuro) came in this morning to talk about Danny and see the video of Danny "seizing" (see my FB page to see). I have to say I was very impressed with his knowledge and interest in Danny. Might even think about switching Dr's to him...we'll see He had many ideas as to how to help dx what's going on with Lil Man. Right now Danny is hooked up to a long term video EEG and of course no episodes have occurred since they were put on. I believe we are going to take him off All his seizure meds and see what happens. If things get worse then he will put back on the ones he feels with help instead of having 7 different ones that could potentially not working, as some could counter act one another. If they are not seizures then we can peruse the route of dyautonomia, possible mitocondrial disease, or it's the progression of his brain damage. Good, bad or indifferent I want to know what or If I can get my son back. I'm punting here! He had a thought that because I have 2 mito diseases (MS & fibro) that possible Danny has an underlining mito also. I need to know what's going on. This was not an easy decision to make, but I feel it needs to be done. The way things are and have been this summer is no quality of life for Danny and it breaks my heart. We'll see how things turn out. I have no idea when we will bust out of here. But I will be running home Thursday for Avrianna's conferences and then off to "The Blue Man Group" in the evening. I can't wait to see Avrianna as I haven't seen here since I left her crying In the ER room last Wednesday. As always our life has gotten a bit crazy, and I'm forever grateful for all your love and support getting us through another health crisis. You guys are amazing!!