Abe is home. This afternoon he scared us once again. His sugar dropped to 21. Thankfully we had a plan when we left the hospital so that we didn't have to call the ambulance. That was not the best experience for us Thursday night but we were extremely scared. Today we gave Abe apple juice (thanks to our neighbor friend Sally cause we never keep it in the house and she had given some juice boxes to Michala so we had that for Abe) and within a few minutes he stopped the convulsing. I checked his sugar after 10 minutes, too early to check but I wanted to make sure his sugar was going up and not still dropping. After about 30 minutes it was above 100. This little boy - I just don't know.
Now to back track. I was up late Thursday night knowing it was about time for Abe to eat. He was sleeping and I heard him make a strange noise. When I got to his bed his hands were shaking. I assumed it was a seizure. His eyes were not quite closed and moving a lot. When I picked him up he was limp and lathargic. I woke Mike and he got Abe. I called 911.
I will skip all the negative stuff cause I am trying my best to forget it. Memories of the tough times we had with Mary Elizabeth going to the ER when she was little before we figured out we could drive to Egleston quicker than we could get help. I remembered it with Michala but was terribly scared we wouldn't get to Egleston in time with Abe the other night. However we could have easily have made it by the time the paramedics got to the house and got us to Newton. His sugar was 18 though and at that time we didn't have a plan.
A couple of God things that I am so very thankful about it is that Kim is only minutes from our house, she was home and came right over. The other is that a nurse from Egleston PICU was working at Newton and got the IV in Abe.
Angel 1 came to get Abe from Newton to take him to Egleston. As soon as they were there I knew he would be ok. We got to Egleston quick and they had a plan to admit him for observation. All that went great and he kept his sugar up.
Within a 2 hour period I was hit with more info than I knew or still know what to do with. All the if this or if that. They did blood work and urine test to hopefully find out more. One of the 5 endocrinologist we saw said because Abe is such a rare (there's that word again) case there are too many specialist all with different ideas and it's making it kinda tough.
So some of their thoughts. Ridding his body way too fast of any type of nutrients, sugar included. Not being able to break down fats so nothing is being stored. Bad cortef. Change in cortef dosing. See I am overwhelmed with all the info and cannot even recall all of it.
We did end up changing Abe's cortef, canitor and phenobarbital doses. We also added corn starch to his diet. We will keep feeding him every 2 hours in hopes of keeping his sugar stable.
He has an appt for his pre op tomorrow. Thanks so much for all your prayers!