Friday, May 28, 2010


It was a weird feeling to leave Children's Hospital this afternoon with Jacob as I left three friends behind with their kiddos staying for the holiday weekend. You think we should be thankful or relieved, but since we so easily could be on the other side, it was more a fact that this time we were on the outside of the hospital doors than inside - knowing very well it can change in a wimp for our little guy. Last Memorial Day, Jacob was in with a urinary tract infection - right after his Make a Wish trip.
We're tonight thinking of Max who is resting after being in status epilepticus, Cici who is resting after having her adenoids and tonsils out, and Kennedy who now has a g-tube button. All our dear little friends who we are always cheering for.
Jacob was overly tired earlier in the week, and with no recent med changes and no illness, it was hard to pinpoint what was causing his increased need for sleep. I picked up the phone and called Dr. C. as so many times before, and we discussed all the possible options, and decided it was time to check the blood level of one of Jacob's seizure meds.
As I was driving home from the hospital, she called me and told me the level was very, very high again! I was pretty surprised actually, since the last two days Jacob has not needed as much sleep, has been alert, vocalizing and smiling a lot. It's unbelievable to all of us what a tolerance level Jacob has to meds. Dr. C. has simply stopped comparing Jacob to other kiddos. Since we already had decreased one of his other seizure meds yesterday, we decided to stay the course for now. We will monitor Jacob closely over the coming days, and can call Dr. C. any time, if we want to decrease the seizure med. If Jacob stays alert, we'll get another blood level next week, and we'll decide what to do next. It's always that balancing act between keeping his seizures under control, and keeping the side effects to a minimum.
I am fine with the course of action, but I have this worry deep down in my stomach that Jacob's liver is not metabolizing this seizure med as well any longer. It's still a bit of a mystery to me how the level has increased so much despite no increased medication...We'll see what the docs say next week.
For now, we'll watch Jacob closely over the weekend. Enjoying his smiles and little conversations. Enjoying that his lungs sounded really clear today. Enjoying that Sarah is already in summer break mode after her first sleepover with way too little sleep, and first day at the pool. Enjoying a few BBQs over the weekend, and hopefully a dip in the pool! Hoping that little worry about the liver will disappear.
Happy Memorial Day!
Love, Maria.

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