Sunday, September 5, 2010


Our dear friend Samantha, who passed away in July, once had a powerful sign outside her hospital door on the 8th floor of Children's Hospital saying: "Seizures Stay Away".
Tonight, Jacob would need that sign. He started seizing this afternoon. His rescue medication didn't work today, since he vomited twice right after he got the medication. The timing was bad. It was about half an hour before nurse Gemma's shift was over, and she called an ambulance, since we were not yet home. The ambulance crew didn't feel safe to wait for us to be back home, so our little guy went in by himself. We could see the sirens from our car as we were rushing home to get Sarah and her friend out of the car, so I could ride down to Children's.
This was a first. I have never had to follow Jacob in my own car. When I can't see Jacob, he automatically is worse. I was so worried about him, called the ER so they would know what to do and not do. Talked to Gemma to get the details once more, and probably talked to Joakim two or three times as I was cruising down the highway - yes, above speed limit!
As I entered the ER, one of the docs who knows Jacob really well, turns to me and asks: "So, what were you guys up to this time?" with a big fat smile. That made me realize that Jacob was doing ok, but I also felt really bad even if I know he was joking with me. Last time, we were at a wedding when nurse Gemma had to call his ambulance, this time we were out for lunch...That moment, I realized that I was dressed a bit more appropriately for the ER as well! I had left my make up and my red party dress at home this time :-
Jacob was out of the two seizures. He was loaded on benzos, but as always, that doesn't make him sleepy at all. He was breathing on his own, and looked pretty good under the circumstances. We were told that he would be monitored for a couple of hours, and the plan was to send him home, if he had no more seizures or vomiting. There was no sign of illness.
We spent the afternoon watching "Finding Nemo", and I even fit in a nap. Jacob stubbornly stayed awake despite the rescue meds. I also talked to Dr. C. to firm a plan, if he would start seizing again, since we both thought this was related to going down on two of his seizure meds lately.
We were happy to be discharged despite Jacob's fancy Polo shirt being in the trash. The ambulance crew must have cut it open in the ambulance. It reminded me to keep the fancy shirts only for special occasions :- The pretty low phenobarb level in his blood (normal for our seizure kids, just very low for Jacob's standards) worried me a bit.
We came home, had a quick dinner, got both kids in bed, and started watching a movie. It was about as much energy as we both had left. About 50 minutes ago, the seizures started again. I followed the plan we had agreed with Dr. C., and also checked in with her on next steps.
Jacob is now resting in his bed after more rescue meds. He is hopefully soon off to dream land. Joakim is telling me he's going to take the night shift in Jacob's room tonight. I'll take him to the ER again, if that's where we're going over night, since the next step is to load him up on phenobarb.
We have a really good week behind us with school starting up for Jacob. On Tuesday night as I was writing in my diary, I was so happy to write down the details of his school day, but I ended the page with: "Nothing has changed in Jacob's medical status, we better enjoy each moment we can get." I felt like such a party pooper and realist to even put that down on the same page as talking about friendships and building blocks and ships, but it is unfortunately the reality we're dealing with.
Tonight, please pray, hope, send positive thoughts that Jacob's seizures stay away, and that we don't need to bump up his phenobarb in the ER tonight or tomorrow.
I hope everybody is enjoying the long weekend!
Love, Maria.

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