So What's Up with David?

After sending a billion updates, I thought I'd use this page again to keep everyone up to date as often as I can.

I still can't post pictures from my iPad, so these will be words only. So here's the story up to now.

Back in August and Early September David was doing really well. Pulling to stand, crawling a lot, sitting and playing for long periods of time. Then in mid or late September he seemed dizzy and would fall over when kneeling or crawling. We started adjusting his meds, thinking it was a side effect. Over time he lost more and more skills, and the meds didn't make it any better. So by the time January rolled around he was no longer able to crawl, sit, roll over, hold up his head or lift up toys. In January he had an MRI which later proved to be normal.

On Tuesday this week (just yesterday!) I brought David to Children's Mercy Hospital to have an EEG, which is when they hook 40 some electrical leads up to your head and look and see what kind electrical signals your brain is putting out. We were hoping David would have a seizure while he was hooked up for his 1-2 hour appt, so they could see what kind of seizures he was having.

About 15 minutes into the test, we got a message that the neurologist monitoring the exam was concerned about the high and constant level of sub-clinical seizures David was having. They administered some anti-seizure med and decided to admit him to the hospital. By 11am we were upstairs checked into a room on the 3rd floor. I google what an EEG should look like it it was normal, and had to admit David's was pretty abnormal! Still, it was hard to understand all the rush. He looked fine from the outside, and I suspect he'd had this level of seizure activity since September. And speaking of that, what did these seizures have to do with his losses, if anything? Well...

The explanation I got was that they didn't know if there was a connection, but the seizure activity was alarming and they needed to stop it. Then we'd look at the long term issues. So, on Tuesday they started Depakote. It made him a little sleepy and it didn't look to me like it was doing anything seizure wise, but maybe it would take some time to build up to a therapeutic dose. Monday morning they explained there had been a positive change after the Depakote, just a small one. So they were considering increasing the Depakote.

Mid morning Wednesday I got to talk with David's team or doctors and ask some question that had started coming together for me. The summary was this, either the seizures had caused the losses he'd had, or it was the other way around and some unknown condition was causing this continual loss and the seizures were just part of that downfall. Probably the only good news out of this all was that no matter which way it was, they would treat it the same: stop the seizures and watch what happened. So stopping the seizures because the primary goal.

Wednesday afternoon they doubled his Depakote and added Fofphenatoin. I thought his EEG looked better to my google/Wikipedia trained eyes, even though it was clear the seizures were still happening. And I decided that "sub clinical" was too boring a way to describe them and decided to call them ninja seizures instead. They were both hard to see and resistant to anyone trying to stop them. See, that right there is proof that my sense of humor was intact a few hours ago.

So, a very wonderful friend came and sat with David, who was now sleeping due to all the new meds. I think the last time he was awake was around 8am this morning. Anyway, the friend sat with sleeping David and I went home to shower, repack, and spend some time with the rest of the kids. I picked them up around 3:40 and at 4pm David's doctor called and explained they were trying Versed as a last try to sto the seizures. They were also getting an ICU room ready for David. They wanted to move him over and medically induce a coma for 24-48 hours. I felt a little shocky. I told them to go ahead with the versed, but I did not want them starting the coma until I talked to Tony and had a chance to thnk of more questions to ask. By 4:35 we had two very good friends ready watch the older kids and were on our way to the hospital. By 5:30 we were talking with the doctor about why the coma was necessary. We decided to give permission for the procedure.

They had a room ready in the ICU and moved him over. By 8 pm we'd been walked through the procedures by several medical personel and it was time to wait. Tony headed home to be with the other kids and I'm waiting.