Saturday, December 18, 2010


I am home again, but it took some work to get me home today! I hadn't even woken up, and went into a seizure this morning. The resident who has never seen me before freaked out!!! I mean freaked out! He wanted to bring out the big gun rescue meds right away, mom had to fight him pretty hard to simply give me my morning meds, which we knew will take care of it. I also badly needed suctioning. My mom who is a pro was not allowed to do it, the resident only wanted to have the nurse get down my nostrils...which made my breathing really bad...and the resident even more hype! Not a good start to the morning for anyone of us. The resident then stormed out of the room with the last words being that we couldn't go home today!
My mom was pissed, but knows that keeping her calm is always getting us further. Instead she went in to the kitchen to get her first badly needed cup of coffee. She slid her cup into the machine, and in a second a dad is moving my mom's cup out of the coffee maker to make room for his own cup. Apparently, he thought my mom had gotten ahead of him! That didn't put my mom in a better mood considering that there is truly noone on a schedule in the hospital, so to fight over morning coffee is not on my mom's agenda! She just needs that good caffeine!
The day got just settled in with her cup of coffee and the Chief Quality Officer of the hospital walks in the door...Mom is working with him on one of the committees of the board, and she didn't think her red and pink Christmas PJ and her hair being far from presentable was the way she wanted to meet him outside the board room...Pretty quickly, mom realized that he better understood Jacob's needs than the resident, and that it was time to take a step back from chest x-rays and blood gas draws, and that he was willing to work on getting me home today. She was also pretty impressed that he so clearly loves working with us kids despite being this high power guy in the hospital.
The day got better...the respiratory guy had a hard time suctioning me this morning, so mom had to take over from him. At the same time neurology walked in the room. They were very unhappy that the floor was considering keeping me. As the attending neurologist said herself: "for what reason should you stay here? You even have to take over the duties of the respiratory therapist!"
After that, the plan was to go home!!! Mom got busy, since she realized that Sarah and her would make it to the Nutcracker performance after all. Dad and I packed up all our stuff, so we could go home!!!
When Sarah came home from the Nutcracker, I gave her my Christmas gift I received from neurology this morning. I haven't seen Sarah's eyes so big in a long time! She was in heaven, and I knew she can use the gift more than I do right now. She also read all the cards that you all send me in the hospital. I am so lucky to have you all supporting me from near and far.
I am always resting better at home, and so happy to be home again. I can't promise my family right now that I won't have to go back to the hospital. My seizures are still far from managed, but I will do my best. I am sure a lucky boy to have them follow me where ever I have to go.
Mom is going back to the hospital Monday afternoon. Ironically, the Operational team with all it's VPs have had a rough year and need to get back to the basics on why they are working at Children's Hospital. Guess who they invited to talk to them? My mom. She will lift their spirits in time for the holidays.
Love, Jacob

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