Friday, November 19, 2010


It's me again. Oh boy, has this been a really rough long week. My break on Tuesday didn't last long. I went into status epilepticus Tuesday night again, and has done that every night this week. Sometimes once, sometimes twice. My meds are changing every second day, and I am drugged up every night. I feel that my head is a big fat cotton ball. I am working hard to breathe with all the meds hitting my fairly small body. I am trying to smile, but have only accomplished "half" smiles this week.
My nurse Libby is great! She hangs out with me every night during the work week. She has been a trooper helping me through these nights. Tonight, it's mommy's turn to "play" the night nurse. Mom and dad are exhausted, since they are also up with me every night as I am seizing, so I hope I can do well tonight, I just don't know when my increased meds will kick in.
Everybody is worried. Everybody is on high alert. Everybody is remembering this time last year. We did spend an hour with Dr. C. yesterday. She is awesome, and it's amazing the trust she puts in my parents to handle pretty heavy drugs and med changes all from our home. We have a plan stretching over 3 weeks to increase my current meds to get me to a better seizure free place, and before we will introduce any new medications. Dr. C. inquiring left and right on what would be best for me in my situation.
Last year, that was all managed from the hospital. This year we're doing it from home, at least so far. My mom thought I didn't hear her, but she thinks we can end up in the ER any day or night right now.
All the meds have slowed down my system, so I don't go potty right now...we're now on day 3 without poop...despite Miralax and a nasty suppositary today (my first ever)! I am hearing mom will call the doc tomorrow, if nothing has happened. I am afraid I might have to go in...
I also wanted to tell you what mom was up to yesterday. Dr. E. and mom did a presentation to the Board at Children's Hospital about my clinic, the Special Care Clinic. Dr. E. did a fabulous job presenting my clinic. They also all wanted to see me, and mom had dressed me up in a beautiful snowflake jacket that I got from my aunt Jenny. Then it was mom's turn to tell the board of 60+ people what my clinic means to her. Mom spoke from her heart, and there was not a single person with a dry eye in the room including Dr. E. and my nurse Gemma. Mom is still surprised to this day the effect our story has on people. When we were done, the president of TCH thanked us all including myself.
We were then heading over to neurology, and a woman ran out of the room to thank my mom in person. As we chatted with her, a couple of board members also strolled by, all so impressed by us and the clinic. We were both very happy to be able to do this for Dr. E.
Last night, my mom let go a little bit. She just felt better by the fact that Dr. C. has a plan for me. Dad and her ordered in Chinese, and took it easy...well at least until 9:30 pm when the seizures started acting up again...
I can't promise what will happen tonight, but I know that my mom will be with me every step of the way.
Good night, Jacob.

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