Sunday, July 17th - Day 28 Update

Very thankfully, Tori had an uneventful, peaceful and restful day without ANY Myoclonus activity. This was a far cry from the events yesterday afternoon and evening. Tori was also NOT given any additional drugs outside of the standard set of Melatonin, Clonidine, and Valproate. She was given some Tylenol and Codine for pain relief throughout the day since every muscle in her body was extremely sore after being tensed up for two hours straight yesterday...

I was very fired up this morning when I awoke at the hospital and since some of the PICU doctors actually visit this site, I won't say that I TOTALLY ran their daily meeting in Tori's room but it was pretty darn close. I basically set the precedence that Tori's Myoclonus treatment will NOT be in reactive mode anymore and that it would be in full proactive mode moving forward. If I or anyone else begins to see the onset of Myoclonus there WILL be some fast action. No more Ativan for 30 minutes, more Ativan for 30 minutes, some Clonidine for 30 minutes, then finally totally paralyize her with Haldol... Not going to happen again!! I've seen that procedure twice and I already know it doesn't work and it surely isn't healthy for Tori. There must be more reasoning and thought behind the treatment whether that means more Clonidine, more Valproate or bringing back Keppra. I also requested a meeting with a neurologist on Monday to reassess Tori and the drugs that are being administered.

The doctor's final thoughts on yesterdays fiasco were that the Clonidine patch placed on Tori did not saturate her system quickly enough to prevent the Myoclonus. The patch is designed to provide one weeks worth of steady Clonidine into Tori's body. The Ritalin was given because there were no Myoclonus signs at that point but about one to two hours afterward, the Myoclonus went into full gear and the Ritalin kicked in as well. Not a good combination... We will now hold on all Ritalin or anything like it until there is NO Myoclonus activity for two to three days straight. When the Ritalin or equivalent is given again it will be in a very minute quantity.

Again, Tori slept on and off all day on her own. She also went a FULL 12 HOURS without the respirator!! Very nice Tori!! Maria and I gave her a great sponge bath, hair wash, massage and lotion job today which she seemed to really like. When I left the hospital at 9:00pm tonight she was finally, fully awake and aware. It basically took an entire day for the heavy drugs to wear off... Maria is spending the night with Tori tonight.

Alright!! I'm off to sleep in my own bed tonight!! :-)

Thanks and good night everyone,

-Tim