Monday, November 15, 2010


I hate the title of tonight's journal entry, but it's unfortunately true. Jacob's seizures are not well controlled. We have seen more seizures over the last couple of weeks, and have been sort of able to manage them from home. We use the rescue meds, we monitor Jacob with his pulse ox for his oxygen level and heart rate, we give him extra oxygen when he needs it.
We have seen different kinds of seizures. Some that we have never seen before, some that we know from last year, some that we sort of see from time to time. Last night, Jacob did have a longer seizure. We almost had to call 911 at 1 am in the morning, but he stopped seizing as we were drawing up the last med to give him before calling an ambulance.
Jacob had an ok day, not the best, but no more seizures - until it was time to pick up Sarah from choir. I don't think I will ever get used to the feeling of having a kid seize when you have to drive! It doesn't matter that the drive is only a few minutes long.
I was very proud of Sarah when we got home. I had to give Jacob more meds and call 911 at the same time as I was talking to Dr. C. on the phone. Sarah called daddy, and informed him of what was going on. She also called our neighbor to ask if she could come over to them as she was waiting for her daddy to come home. She so helped me as I was getting Jacob ready for the ambulance, and at the same time making sure she had a place to be.
The ambulance ride was one of my better ones, if you can rank them. Jacob stopped seizing pretty quickly after we got into the ambulance. The paramedic was very calm, and said that I was in charge. If I didn't want Jacob to have more meds, he was fine with it. If I didn't want him to poke Jacob for an IV line, he wasn't going to do it. I was amazed!
Instead, he was asking about Jacob's mitochondrial disorder, and if we had a DNR in place. I don't think I ever have felt so convinced that having it signed at home is the right thing for us. What he told me in the ambulance tonight made the DNR the right thing. He was also constantly rubbing Jacob's hair, and telling me what a beautiful son we have. Tonight's paramedic will stay with me for a while.
Our ER visit has also not been a typical one. We're all nervous. I am. Joakim is. Jacob's neurologist is. We all know what Jacob went through this time of the year last year, and we're not repeating it. Dr. C. put together a plan quickly, communicated it to everybody and us. We were all on the same page. She also knows we so don't want to go back to the PICU, so she suggested instead that we stay in an ER observation room over night. 
Jacob is getting a load of one of his seizure medication tonight. His level has dropped again, and could very well be part of what is happening. The neurologists also want us to try the newest seizure drug that is out on the market. It is commonly used in adults, and they are starting to use it in children. It is a medication that is used in cases like ours when you simply can't find one drug that does the trick. I am up for trying it. Last year, Jacob was one of the first one on another seizure drug, and it was the one that truly got the seizures under control and us back home again.
In Jacob's case, we need to get the seizures under control before they explode. We know unfortunately too well how that looks like.
I am worried. I have seen worse, but I am worried. I am not sure if it's the time of the year that is contributing to my worry or the simple fact that we have struggled lately. Most likely a combination of both.
Send positive thoughts our way, and that Jacob gets to a seizure free place soon again!
Love, Maria.

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