No seizures today, thankfully.
Connor's hospital doesn't have a neurologist on call on the weekends, so I called and left a message that they should get on Monday. In the meantime we went into the pediatrician's office, which thankfully is open on Saturdays, and got another prescription for Diastat. Of course they didn't carry it at the hospital, so we had to try a couple of different pharmacies but we did get it filled today. I feel a lot better now that we have it.
Hopefully the neurologist will call on Monday and get us in. I'm sure until we actually have a game plan I'm going to be totally paranoid and every time Connor so much as hiccups I'm going to freak out. Connor wasn't quite himself today-- he seemed very tired-- and so every five minutes or so either Jer or I asked him if he was okay. He'd pop back up long enough to assure us that he was all right before slumping over in his chair again. Talk about nerve-wracking. If we aren't careful he's going to learn that slumping over and going limp gets him immediate attention and he'll start doing it all the time. Wouldn't that be fun?
We'll probably take it pretty easy until we get the chance to see the doctor. Right now nothing has changed-- he's still on the same medication dosage-- so we don't know how long we'll have between seizures.
I'll let you know when we know something. Let's hope it's a quiet night.
~Jess
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4 years ago
4 comments:
I know Connor is tired from having a seizure (especially such a long one, yikes! Poor Connor) but does he also have sleep apnea?? I'm not sure...I know you mentioned he has a monitor at nighttime.... although not CPAP (the continuous air pressure machine) from what I recall. Can Jer walk or are his feet extremely sore? That picture you posted of the wire was... eeeek! Haha. I can't believe they just pull that out.... also, I'm curious, maybe you can call the Puyallup street-cleaning service ahead of time & warn them that you have two fellows in wheelchairs & if it snows getting them out to the van will be difficult not to mention trying to get out to get supplies/etc--- hopefully they can put you on a priority list for your street to be cleared first. Just a thought.....although I think ALL of us would prefer you to stay in instead of trying to drive in snow...yikes, last year was SO bad. I think I'll opt for staying home with tea & a good book & not risking my life on the street :P
Oh HUGS for you Jessie. I can only imagine how nerve-wracking this must be. I'm relieved for you that you were able to get more of that medicine. I hope you don't have to use it, but it's good to know you have it.
-Pam
Thank goodness you got the prescription for the Diastat- at least that gives you a little "insurance" until you can get into the doc on Monday.
Give that sweet boy a hug from all of us, and I hope he recovers his energy very soon.
I hope it was, indeed, a quiet night. I imagine that you didn't much sleep. I'm here if you need to vent.
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