Lucas James Stisher: July - Alabama & The ER

In July, we spent a week in Alabama visiting Bran’s family.

Halfway through the trip Lucas started having seizures again and we ended up in the ER at Huntsville Hospital. It was pretty awful, it happened in the middle of the night. He remained conscious the whole time… but we knew something was very off. After he got through the shock waves and crying, his eye continued twitching and he was delirious. He talked about things that made no sense, and asked for “knuckles” when no one was standing on that side. I can’t even describe how scary it is to see your child like this.

Bran and I, and his mom drove him to the hospital 45 minutes away… we went through all the tests… CT scan on the shunt, xrays of the shunt in his belly, blood tests, etc., and were admitted that night. He had another one in the morning, which was even scarier that the night before, and they did an EEG that afternoon. Luckily they captured a seizure on the EEG, which told them the part of the brain the seizures were coming from. It is where the tubing from the shunt goes through the healthy brain on the left. The neurologist said that this is very typical…. she tells all her shunt patients that they will most likely have seizures at some point because the brain is trying to make connections. With this foreign object in the way, it causes abnormal firing. It is mostly contained on one side of the brain, but the firing can ricochet through the brain and cause convulsing on both sides, which we saw happen with Lucas. So—long story short, we are back on seizure meds for a very long time.

We spent two days there during our vacation. I hated being away from our home hospital, but the staff were absolutely fabulous. We loved the neurologist, and the southern hospitality... we felt like we were in a hotel at some points…such as, I asked where the cafeteria was… the nurse told me, but then said “why?” ... I told her I want to get coffee… she says “no, let me get it for you” and brings me a hot cup. They constantly came in the room to ask if Bran and I needed anything…blankets, a beverage, etc. There were clowns that visited Lucas in our room, volunteers came and brought coloring books, toys, blankets, and a smiley face pillow for him to take home. We had a revolving door with all the hospital visitors! You just don’t get that extra level of hospitality at Children’s in downtown DC!

Lucas was well known after the two days. Every single person that walked into our room, he'd sit up and yell for "knuckles"... every nurse, volunteer, even the people collecting trash got knuckles. The day we were leaving, Bran overheard the neurologist on the phone getting his EEG CD from the lab. She said "Lucas Stisher"... then there was a pause and a laugh.. "yes, that's right... Knuckles." You can't keep this boy down for long!

With Anna - boat ride with Gran and GranDan