Sunday, May 24, 2015

Two weeks

  Two weeks ago, my sweet baby had a seizure while I was carrying him in the Ergo at the grocery store. I actually called 911, but by the time I had given my location, the seizure stopped. I quickly drove him to the ER myself.

He seemed more or less fine as soon as we got there, maybe a little more sleepy than normal. His blood sugar on arrival was 19. 19! I've never seen one so low. Of all the reasons why a kid could have a seizure, low blood sugar was not really on my radar. And yet, two weeks later we are still here, Ezra hooked up to a steady, stuttering drip of glucose into his vein. Apparently, he has a condition called Congenital Hyperinsulinemia.

There is so much to be thankful for. As I watched his face turn pale and quiver, I was terrified he had a brain tumor. Or severe infection. And he doesn't have any of those things. He has remained his normal, smiley, adorable self during this whole ordeal. (With the short exception of the times they have been trying to draw blood or start an IV)


After being in the hospital where I work for several days, we were transferred to a bigger facility just down the road that has better access to the endocrinologists who treat him condition. Ezra had his first (and hopefully last) ambulance ride.
We started on an oral medicine to try to raise his sugar. After almost 9 days on that medicine and an increased dose, today we started a second medicine, one that we will eventually inject ourselves. His most recent sugar was 269, so I'm hopeful this will be the answer. We have been incredibly well cared for during this time. My mom flew out after it because clear that we wouldn't leave the hospital after 2 days. Jeff's parents got here Friday.
Our church family has been bringing by so much food that we can't even eat it all. And so many friends and acquaintances have told us they are praying. We are still trying to piece together part of the diagnosis. A genetic test is pending. We likely will have a pet scan of his pancreas later this week.

I am hopeful we will get home later this week, but also praying for patience in case we don't.

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