We went to TSC camp the first weekend in November and Jack got sick there. Saturday morning he threw up his dinner from the previous night by gagging on one of his supplyments. We didn't think too much of it and have been surprised that he even willingly takes the supplyment because of how nasty it smells so we passed it off as that.
We had a good time that day. Jack played a lot. Here are a few pictures. (And a few were stolen from a friends facebook page :-)
We are on the far right, sitting down.
Jack loved watching the archery, so we stayed there for a while. And my mom decided to make a bet that whomever hit a card (they had playing cards pinned to the target) would get dinner cooked for them. I hit 2 so she owes me dinner!
He didn't eat breakfast well though and refused lunch. I got him down for a nap and then Jonathan and I went to the parent meeting. About 1/2 way through the meeting I got a text from Ron (my mom's boyfriend) that said "Jack is throwing up, we need you". So of course I ran back to our cabin. By the time I got there they had him cleaned off and the laundry in the washer. We gave him a bath in the sink and after you could tell that he had a fever. I called the on-call doc at our pedi's office because I wasn't sure where in the camp his neurologist was, and this was clearly not a neuro issue anyways. He had some other strange things going on but our first concern was that he might have a blockage somewhere because of how the food was coming back up in whole chunks. Thankfully his belly was soft and he was acting mostly normal. But she still wanted us to keep a very close eye on him. We did go find his neurologist and his nurse, who were all there, and once we talked we all decided it was best if we packed up and headed home.
We didn't want to leave camp early because it's something that we look forward to every year, but we didn't want to get anyone else sick and if Jonathan and I were going to get sick, being at home would be much easier! Plus if we ended up having to take Jack somewhere we wouldn't have wanted a 3 hour drive to get back to our local hospital. His fever did spike in the middle of the night, he didn't eat for 2 days (and if you aren't on keto, it's not as big a deal, but I had to syringe apple juice into him so that he didn't have to go to the hospital for an IV with some sugars because the body does need SOME carbs) then he had diarrhea for a week.
I was told that he wasn't really contagious and as long as we washed our hands he would be fine, so one day last week I took him to the mall to get out of the house. We rode the train, which he loves, and saw that Santa was there already. Jack ran as fast as his little legs would let him to Santa. It was really cute. We chatted with him for a bit because no one else was there and we gave him some Seize Hope bracelets which he still uses to hold his gloves on.
While we were there Jack did this strange thing where his eyes would get really big and he would go stiff for about 10 seconds. Of course my first though was that it was a seizure and it really worried me. But we decided to chalk it up to stomach cramps. It happened 4 times that day and one the next. He got better though and then everything seemed fine.
Of course now he has a cough and a runny nose. Blah! I'm not a huge fan of this time of year because of this. For most kids a runny nose isn't a big deal but previously, Jack being sick was big seizure trigger for him. He would always have more seizure when he was sick. Then yesterday I had him at the mall again and he was riding this tiny carousel and I KNOW that he had a seizure. There is no doubt that it was and it took everything in my not to burst into tear right there. He knew it was happening and he was scared. It was pretty short, only about 30 seconds, but it was still probably the most crushing one. It doesn't mean that the surgery didn't work. They give 6 months for the brain to heal from surgery before they really start counting, but they still ask if he's having seizures and it is not at all a good sign. Needless to say I had a few drinks last night.
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