Monday, April 20, 2009


It has been a long day starting at 2 am this morning. Shannon woke Joakim and me up due to Jacob having a consistent heart rate of 160 to 170. She also had a hard time waking him up. When he woke up, he was very agitated and had weird movements. It was unclear if they were increased movements or seizures. We made the decision that I would drive to ER rather than calling an ambulance. You can go fast on the highway in the middle of the night!
We were told that they wanted to keep us for observation until neurology could come by in the morning, and decide what to do next. I am sure you all have slept on one of those hospital lazy boy chairs. It's not comfortable, but if you're tired enough you fall asleep, at least for an hour or so.
Neurology came by early, and they were pretty sure he didn't have a new set of seizures but rather increased movements due to an infection or something else going on. A fever of 102 at 7 am confirmed what neurology was thinking. I felt hesitation today from the doctors of what to do next. It was definitely a waiting game to get tests and x-rays ordered. A few hours later we found out that Jacob's white blood count cell was highly elevated. It means he has a bacterial infection, but they didn't understand the cause. We're now waiting for a second blood culture from his central line to hopefully give us more results tomorrow afternoon.
This was a long day in the ER...I spent 13 hours in the ER before we got a room. I do realize that you don't get as speedy service if you're not in the trauma unit, so lesson learned. You also can't leave Jacob alone, so the bathroom visits and breaks are few if any. Jacob was also pretty upset all day long. Despite motrin and tylenol given to him every 3 hours, it just didn't break the fever this time.
Tonight, he is still fighting his fever. He is also coughing and having more movements than he usually has. We're hoping that he will feel better tomorrow, and that we will get some answers of what he has this time.
It's disappointing to once again be in the hospital, but probably not so unexpected with the spring storm we have had in Denver lately. My highlight of the day was my daughter creating her girlfriend book in the car on the way home tonight. Her world is still full of drama with her 1st grade classmates. It was kind of refreshing to disappear to her world of friendships and bossy girls!
I also must mention that it has hit me so hard to see my friend and colleague loose her husband. He passed away in cancer last week. We supported each other during the past 2-3 years as Jacob and Nick had their ups and down. That understanding that was simply there between two friends sharing something too big to handle. It brings me thoughts tonight about Jacob's life and future, and I realize that how much you even think about it, you can't even imagine it until you're there. That is what gets me going, each time I am getting in the car or ambulance any hour of the day to get Jacob the medical help he needs - over and over again.
- Maria.

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