Loving Luke

A few things that I have been reflecting on the last few days...

1. Christmas happens when you're together with the people you love.
2. Four year olds are incredibly flexible.
3. The staff at St. Louis Children's Hospital is AMAZING.
4. Life is precious. We shouldn't need reminders about that...

To say that we've had an eventful few days is such a drastic understatement. It makes me tired to even think about writing all of it so I'll try to give you the condensed version.

As I recently wrote, we increased Luke's seizure medicine almost two weeks ago. Well, unfortunately, that didn't do the trick. Sunday, Luke woke up and began to have seizures pretty quickly. It started slowly and then turned into something ugly. We ended up in the Children's ER. They used two doses of ativan to stop his seizures. We were at Children's until Tuesday for observation and testing.

He was scheduled for an MRI next week but they went ahead and moved it up. That was done Monday. Luke was NOT happy to be in the hospital so he screamed all the way from the PICU to the Imaging Center. While we were waiting to go in, he stopped screaming for a second and said, "I am a wock (rock) star." It was so sweet and so sad at the same time. The neurosurgeon also decided to do a lumbar puncture (aka spinal tap). He wanted to make sure Luke's spinal fluid wasn't too high which could be causing some of the nausea. The official MRI report isn't in but from initial reports it doesn't look like there was a huge change. His spinal fluid was on the high end of normal. So that all tells us pretty much....nothing.

We were released Tuesday afternoon with another increase in medicine. His meds have been doubled in the past two weeks. There's no real answer/reason to why his seizures have increased. We've always known he is prone to seizures due to his diagnosis. We did find out that his seizures are called complex partial seizures. We never had a name for them before. We meet again with the neurosurgeon next week.

We discussed doing a 24 hour EEG with one of the neurologists. Since Luke's seizures - at this point - seem to be so sporadic we decided to see if the medicine increase seems to be working before going on to an EEG again. Luke had already been through a lot and it seemed pointless to put him through that when we already knew he was having seizures. Once they were able to stop his seizures in the hospital, we felt like he wasn't having anymore. So if we would have had the EEG, it likely - again - would have shown nothing.

Obviously we were devastated by Luke's seizures continuing and particularly becoming so bad. Selfishly, I was also sad to be in the hospital on Christmas Eve and Christmas. Children's was amazing though. Every person I spoke to was so sweet. No one at all showed any remorse at having to work and be away from their families to help our family and the other families on those days.

Of course I was sad to be away from Ben. Ben was awesome! He got to stay with Grandma & Pawpaw, play with his cousins, and watch Polar Express in Aunt Amy's car while going to look for reindeer! While we were going through the whole ordeal on Sunday, Ben drew a picture for Luke and found the tape and hung it up in Luke's room. Every time I talked to Ben he almost immediately asked to talk to Luke. Then on Christmas Day when I told Ben that Santa told us he was coming the next day he said.....OK. That's it. Just 'ok'. It was such a big deal in my head but for him...he just rolled with it. We had Christmas with my family that afternoon and Dan's family rescheduled for the weekend. We were all together and that's all that matters.

On Christmas morning, I received a phone call from one of my best friend's husbands. We were pacing Children's, waiting for doctors to release us so we could go home to be together on Christmas Day. He told me that my friend had a brain aneurysm on Christmas Eve. She was waiting to go into surgery to try to repair the damage. At this point she is doing really well. She has made really great progress so far and I'm hoping and praying for a speedy recovery. Please keep her and her family in your prayers. She has two young children who are going to have a lot to try to understand.

I was also reminded of a sweet momma whose little guy can't be with her in body anymore....a momma who had to say good-bye far too soon to her sweet guy. She took time to send mighty love to Lukie.

With everything we went through with Luke the last few days, I was reminded that the most important thing to remember is that we are all together. Period. We are so blessed.

I think Luke is just about back to 100%. He's been really spunky today and seeming back to normal. We're still really scared at night and constantly on the look out for seizure-like activity. But every day will get easier....together.
xoxo
Mel