Wednesday, October 7, 2009


We're back in the PICU as of tonight again. Jacob got 3 weeks and 1 day off from the hospital, one of his longest stretches this year. We're happy we had a longer break, but sad to be back...
The day started well with a field trip to the Cottonwood farms with his class mates. Jacob enjoyed being around the other kids, watching the animals on the farm - especially the little kittens. He also got a little pumpkin that sits nicely on our porch.
When we were ready to pick up Sarah from a friend's house, Jacob had his first oculogyrical crisis in the car. They did increase in intensity very fast today, so never got to pick up Sarah. She stayed with her friend, and I turned around to go to the ER. I didn't make it down to I-25 before I turned around realizing that he wasn't safe in the car. He basically had one LOONG spell, and I started to worry about his breathing. Our friends from North Metro were in our house within minutes. I explained to them that he was not seizing, but had to be taken to the ER for transfer to the PICU for Versed drip. None of them had ever experienced oculogyrical crises, but I flashed them the letter from his neurologist that explains exactly what needs to happen when he has these spells. That made all the difference in the world! We got some action, and got very quickly on our way to Children's once again.
I LOVED that the ambulance driver communicated the letter to the ER doctor on the phone already in the ambulance. When we arrived at Children's, Versed was started right away, and the bed in the PICU was already ordered. It helped that his ER doc was his ICU doc last time he had these crises. I even got a hug from the doc as we rushed Jacob into the ER. I call that service or the magic of our golden letter! I made sure that the ambulance driver gave it back to me before he went off on his next mission. The only disturbing thing was that we were asked, if we wanted them to intubate Jacob if they had to. Our answer is yes, but that's not a question you get every time you're in the ER...Never a good sign.
We're now up on the 2nd floor in the PICU. It's sadly like being home. I am talking to the nurses as they are my friends. They all know about my sore hurting dry socket, about Jacob's pumpkin patch adventure today, and his school and warm water therapy. Luke, our nurse tonight, is one of our favorite nurses, so I know I will get some sleep.
We still don't know what is triggering his spells this time. The suspicion is the flu that everybody else has. His DFA is still pending, but he has a new cough as of tonight.
I think I am going to try to get some sleep. It's getting late in the place that never sleeps. The consensus from us and the staff is that Jacob needs to get out of here quickly before he catches something more. It's one of the worst seasons they have seen in a long time here...I am even asked to wear gown and mask in the room to protect Jacob for things I could spread from only leaving his room and come back in again...I might become a true germ freak before we're out of here...
Good night, Maria.

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