William update

Ohh man Thank goodness for sleep the last few nights!!!  My fingers are so crossed that William’s seizures have stopped. At least for now. He hasn’t had any since Monday night. Which were non stop ALL NIGHT!!

William screamed and crying all day Monday. Which should have been my first clue. I gave him his last pain pill in the morning. After hours of screaming and there was nothing I could do…. I called the doctor. And since he had an appointment Tuesday they wouldn’t call in a prescription. Which I understand I really do but….. urghhhhh…..  When he is in pain or stress’ seizures happen duh… So the day didn’t get any better and the night got worse! 

-During a seizure a few weeks back, William fell and broke his Humorous bone. His left humorous bone. He his left handed. The humorous bone is right under the shoulder bone right under the growth plate. They can’t cast the shoulder so he is in a sling type thing. If he moves it in the first two week they will have to go in and pin it. It’s been tough keeping him down but I’ve been doing my best!-

Seizures started at 8:30 pm and every 30-40 minutes he had another and another and another. ALL NIGHT LONG!!! He does have numberous nights like this but I can most the time handle him. There’s even nights he has seizures all nite and Billy has no clue because I take care of it all. But this night I just couldn’t!!! With his broken arm I couldn’t move him at all, he was DOWN, and hitting and kicking me!!! 

Cooper’s dog Robbie was freaking out in his room. Scratches at the door. He always protects William. So we let him out. Didn’t need Coop up too. Started that Robbie would come at scratch at me then a few secs later I’d heard William go into a seizure. Finally I just laied with William. So I was with him during seizures. Trying to keep him from falling, trying to keep his arm still and just trying something!!!! 

Just sucked!! Hadn’t had this rough of a night in a longgg time!! Finally around 3am just got him up and in the couch. And hoping Billy can get a lil sleep before he had to go to work. Pumped William with more seizure meds and he finally fell asleep on the couch and the seizure slowed!! 

He was in a out of it thru out the day. Seizures take a lot out of you!!! And his appointment with the ortho wasn’t until 4:pm. 

The last time he was at the ortho doctor he said I needed have William move his arm for the first two weeks that’s the most important. I told him I was worried about the seizures because he has no control of his body during seizures… of course. He told me. ‘I suggest you get a hold of his seizure doctor and control his seizures’ WOW really!!!! Why didn’t I think of that!?! Why didn’t I do that 14yrs ago?!?! Ya know why didn’t I think k of that before he fell DURING a seizure a broke his self?!?! Before his first brain surgery?!?! Before we are planning this next brain surgery?!?! Ohh my goodnessss!!!! I was just a tan livid!!! I know he’s just a bone doctor and not a neurologist but come on he’s not stupid right?!?! Trust me my son takes sooo much medicine to ‘try’ to control his seizure activity. I would never give him pain medicine if I didn’t have to if he didn’t need it. That’s why Monday when I called to get more I was irked. 

So he wouldn’t fill the pain meds Monday. And we had one of the worst nights ever!!!

Tuesday, 4pm he had an appointment. William had X-rays. Doctor said I had done a great job not having him move it. And trust me it has not been easy. But X-ray look good. He hasn’t moved it… yay!!! No going in And pinning it. And he did give him another pain pill prescription. Why he couldn’t the day before is beyond me but all is good. 

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Filed under Autism, Life, Tuberous Sclerosis, vent

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