Friday, October 18, 2013


From monitoring Jacob at home yesterday, it was time to bring Jacob to the Emergency Room this morning. He slept all night, was awake for an hour, and then went into a very deep sleep. Nothing would wake him up. That is a very scary place to be.

The emergency room crew was not happy to see Jacob so lethargic and sleepy. More tests than normal was done to figure out what was going on. Blood draws and stool samples, x-rays of his chest and abdomen, CT scan of his brain to make sure there was no bleeding, spinal tap to rule out meningitis. He slept through all of that, which is an art when you know the pain involved as well as the number of transfers we had to do to get all the x-rays and CT scan done. All his specialty doctors were called to see what ideas they would have for Jacob looking so ill today.

After a couple of hours, Jacob was brought up to the PICU. One of his seizure medications is extremely high in his blood right now. Nobody is exactly sure why that is the case (no change to the actual medication), but that could definitely lead to him being sedated and Jacob having a hard time keeping his body temperature up. It could mean that his liver is working extra hard to fight an infection, and just doesn't have capacity to also spit out his seizure medications.

My gut tells me that it is something going on with Jacob's gut. He shows all the symptoms of being sick as when he developed colitis last year. Ironically, we are in the same room in the PICU (for us it will always be the colitis room) and the same GI attending who scoped and diagnosed Jacob a year ago. He has a good memory, and immediately said that it was in this room we had the same conversation a year ago. They are going to wait for all test results coming back tomorrow. If nothing shows up (which I feel they are already expecting), they will scope him again Sunday, and see what is truly going on with his colon and abdomen. Our boy is a risky boy to scope, so our GI doc is thinking through strategies tomorrow on how to best proceed.

We are on high alert. I am seriously worried about Jacob. His core team of doctors are very involved, which is always great, but it is also a confirmation of the seriousness of Jacob's health right now. Dr. E. wants to be updated all weekend of any changes. She is typically pretty cool with Jacob, but not this time. Dr. C. is coming in to see him this weekend. We also hope that the doctors won't miss anything. What about if it's not the gut, and something else? Or something else too?

We are only hoping we can give you a better update about our boy soon. Right now, the PICU is the only place for Jacob to be.

Thanks again to all of you who are reaching out to us. We never feel alone on this journey.

Love, Maria.

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