What an afternoon - 3rd post

I know I posted this picture in my last post....I haven't lost my mind totally.....YET! But this is the face I have had to look at ALL afternoon. No matter what I did to make it better it didn't work. He cried so long and hard today his voice is very hoarse. My heart is breaking!!! I pulled out all the tricks; repositioned, stroked the hair, turned his vibrating bed on, sang to him (I know that probably made it worse, LOL), and I even gave him a sponge bath thinking maybe he just felt miserable. No relief for Danny...I wish he could talk so I knew where it hurts, sigh. So I played the big card....I called Dr Kasper (not only after hours, but he is on his holiday vacation in another state). He was a big help!! Danny is resting peacefully now, but too peacefully. I knew that was going to happen as we increased his Clonezepam (don't really like this med) which is for his spasms and seizures. It's a muscle relaxer so to relax his spasms it also relaxes his airway, YIKES! He is already destating and on the bipap. As long as he doesn't drop too far down with his breathing I'm ok with this.....it will let him rest and recover. Danny's pain is like a snowball rolling down hill...if you don't nip it in the bud right away he becomes (like his sisters attitude drama queen) a drama king. Not to any fault of his own but his lil body and brain just can't comprehend what is going on and he goes into a HUGE sensory overload. Actually I had thought this was going to happen alot sooner so he was doing well. But with today, his pain I couldn't fix it in time, which in turn started crying, then spasms, then came the seizures. I felt totally helpless as I did all that I could......so that's when Dr K came in. I hope this works out for him and I get to see a smile or two on his birthday.....no more pain & crying ...... cross you fingers. Thanks again for all of your support it's afternoons like this when I think I'm going to lose my mind, then I come on here and you all make me feel like I can do this. You guys ROCK!! I hope to post pictures of my smiling lil birthday boy tomorrow. My mother, niece, and nephew are stopping in the late morning to say HI and see the birthday boy.....then if weather permits I got an email from the kids Make A Wish grantor's and they wanted to stop out tomorrow night. YAY! We are trying to stay warm with a fire in the fireplace as the weather is still extremely cold and it looks like we are suppose to get another 2-4" of snow everyday for the next week, AGH!! I can't believe the amount of snow already on the ground this year. They said we have already gotten over 3x the amount of snow from last year this time. Florida here we come.....I wish!! Thanks again for following our journeys.