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!

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.

Growing Like a Weed

Well I know it's been a while since I posted. Sorry Katie! Conner is growing up so fast. It's exciting, but scary at the same time. I don't want him to grow so fast.

Now that we have him on some good medicine, his seizures have been really few and far between. His flu scare turned out to be pretty minor. Since he had the vaccine, he only had fever for that first night, and all was well after that. We are still doing breathing treatments daily just to avoid any wheezing and coughing.

Conner is now wearing his molding helmet full time (23 hours a day). He's doing pretty well in it. Better than I expected anyways. It's just makes holding him really hard. It's like his own personal weapon. Hopefully it will do it's job quickly and we only have to endure it for a few months.

Conner also has another swallow study scheduled at Cook's on Friday. We really hope this goes well so that he can eat some stuff orally rather than eating by g-tube all of the time. He loves to taste things, and I know he would like it. So wish us luck.

So Much For Good News

On Friday, Conner had his first seizure. He has had several since then as well. Tonight since 7:00 pm they have come on the hour. It looks like it will be a long night. We took him to the Dr. on Friday and she didn't do much. Then when we took him in Monday to see his actual pediatrician,
where we were told that he had a left ear infection, a cold, and bronchiolitis? or whatever they said. Anyways, he is now on Keppra for seizure control. We are working on getting that dose right to control them better. He also is on antibiotics for his infections and nebulizer breathing treatments every four hours for his chest congestion. Sounds like we will be going to Ft. Worth for another EEG so his neurologist can see what is going on. Most likely they emerged due to him being sick.

At least he was well for Christmas. There are many other parents on the loop that had sick children, and spent Christmas in the hospital. Hopefully he will get better soon, and we can say goodbye to the seizure activity for a little while.