Tuesday, March 24, 2009

ACTH it is!

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!

Thursday, March 19, 2009

News!

Well we have been trying to have another baby since January. I just found out on Monday that I am pregnant. I'm only about 4 1/2 weeks so we are keeping our fingers crossed that everything goes well. My first Dr. appt. is not until April 15th and I can not wait. Michael seems to be just as excited as I am. The Chinese gender predictor says it is a girl, and I have seen that it is pretty accurate, but we will see. Either will be just fine with me.

Last Sunday Conner had a different type of seizure. The Dr. and us feel that they are most likely infantile spasms. These are the bad ones that have to be treated quickly and with about $80,000 worth of medicine, ugh... So on Tuesday we will be admitting him at Cook's Epilepsy Monitoring Unit for 24 hour observation and EEG. That will be so much fun I'm sure. I guess it will allow me to finish the last Twilight book. I have to stay with him at all times since I am going alone and there will be no one to relieve me from my madness. I'm sure I will survive. Then they will determine that he is having the infantile spasms and start giving him ACTH injections. They will also be training me to give the injections, which I am NOT looking forward to. This medication has lots of side effects besides being outrageously expensive. So we will have numerous Dr. appts. to monitor his blood pressure, glucose levels, etc. It also lowers his inability to fight infections. Like we needed any help in that department. He gets sick so easily. So I guess that means we might become a hermit for about 6 weeks. I don't care what we have to do as long as it gets him well.