Well we checked in the hospital at about 9 am this morning. The day started off ok until I registered Conner and spilt my chocolate milk all over the waiting room floor. Luckily the clerk was very nice about it and called housekeeping. When we got to our room, there wasn't even a bed for him yet. They wheeled that in about 15 minutes later. They hooked him up for the EEG and we waited. About 4 hours later the Dr. came in and gave me the news I was expecting. He is having infantile spasms. This is a different kind of seizure than he was having before and they are worse. For some reason they can cause regression from any of the things he may have already learned. So we have to treat them quickly and aggressively. He has to have ACTH injections everyday for about six weeks. These are bad shots all the way around.
First - I have to give them daily
Second - They are thick like gel so it will hurt
Third - They have wicked side effects like irritability, excessive weight gain, possible high blood pressure and hyperglycemia
Last - They cost about $24,000 per vial and we will need at least 2 (good thing we have insurance)
So now instead of going home tomorrow like I thought and hoped for, we will be staying until at least Thursday. I'm just praying they will release us Thursday and the medicine arrives by then.
Well enough venting about that. I am just preparing on having to give my baby a shot that hurts and has even worse side effects. Yuck!
About Me
- Barbee Family
- Michael and I were married in Las Vegas, NV on July 4, 2007. We had a wonderful wedding with beautiful pictures taken at many of the Vegas landmarks. On June 29, 2008 we welcomed our first son, Conner Garett Barbee, into the world. As many of you know, Conner was born with Miller-Dieker syndrome. He has been a very wonderful blessing. He is our precious angel!
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