Let's retrace the road that we have traveled this past week...
Buck, Destiny, Tank and I arrived in Salt Lake City last Saturday, to pick up a very missed Benny after he spent two weeks with his Aunt, his Mee-Maw and all their family. He had a blast, (and quickly overcame his post-vacation-without-mom trials and tribulation ;-). We stayed in SLC for two nights and it was awesome. Just awesome!
Driving home on I-80, Buck remembered his family reunion is this weekend in Bowstring, MN (I think it was the morning after we were so blatantly discriminated against in Little America, WY - ha! Truly Little America!...). We spent the next 200 miles on I-80 strategizing if and how to get to Bowstring. We hit Rawlins, WY, and our van went north, and the Great Burton Adventure began!
As with any spontaneous extended vacation, there were some initial obstacles to overcome.
-> Desty's meals, Tank's food, we didn't bring a cord for my wheelchair battery charger. No problem! - Just part of the adventure. We conquered these things with smiles on our faces :-)
My smile vacated the premises on Wednesday when Destiny's neurologist emailed me to inform me that Desty's lab results show she if very deficient on a specific amino acid that is necessary for Ketogenisis, and pick up a prescription immediately. We quickly had our local pharmacy transfer the prescription to Billings, MT, and we had to wait until yesterday afternoon to pick it up.
I looked up Levacarnitine on the Internet and one of the side effects is SEIZURES - LOL! I immediately turned to the experts - my fellow Keto parents! As it turns out, lots of Keto Kids are on this drug, but it is a "start with extreme caution" medication. Very, very slowly. Even when extreme caution is taken, many children can't tolerate Carnitine supplements.
On that note, and no thanks to Desty's neurologist, I decided to give her only half the prescribed dose this afternoon.
Today was a wonderfully enjoyable day...we had so much fun together...all of us. I-94 is beautiful!!!!
Tonight Destiny had a 23minute seizure on I-94. It was a pretty bad one. I believe that she is okay because of Mother's Intuition. I heard the DVD Player fall, and I looked back and Tank had his front paws on the bottom of her car seat. Odd, I thought...then four minutes later, a dreadful cry...I knew immediately. Light on, and there she was, eyes wide...I won't detail the next several minutes. Her "Rescue Med" finally worked...in the early days, this drug had immediate results...in the early days. The thing that really concerned me this time was not knowing what a possible Carnitine-induced seizure would present as. If oxygen is needed, where the hell are we?! (Excuse my French...) Does Buck have enough room in this van to do mouth to mouth? We were parked on the shoulder of the Interstate with our hazards on, with an occasional semi rocking the van.
Alas! Destiny's fine, I'm fine, and we will continue on our voyage. Hopefully, she won't even know it happened when she wakes up!
So, why are we resting at a hospital?
It is a bit morbid to spend the night in the hospital waiting room, however, my son thought it was pretty cool ;-) I have to monitor Desty very closely with the rescue med in her, and it's not possible in the van.
This was just another bump in the road. I don't get to sleep last night/this morning, but I sure am looking forward to stopping early this afternoon to sleep!
- Posted using BlogPress from my iPad