Okay, so for the past month we've been excitedly waiting for Emmy's upcoming tonsilectomy/adenoidectomy surgery. According to his doctor, this has an 80% chance of ENDING his fever cycles permanently!! The doctor prefers the steriod treatment which involves giving two doses of steriods at the beginning of a cycle and it stops the fever in about 24 hours, but you have to do it each cycle until he outgrows the cycles - which will probably be sometime in his teens. That route has an 80% success rate as well, but since it is something that we would have to do all the time, we opted for the one-time surgery.
Anyways, his surgery was scheduled for this Thursday and we were all looking forward to it. I went out and bought a special box of popcicles just for him for afterwards, lined up a babysitter for the other three kids, had a friend lined up to come with me to the hospital, checked on what kinds of meds he could take beforehand...I thought I had everything lined up nicely. And then...
I called the hospital to check on what time the surgery was scheduled for and found out that instead of scheduling us for surgery, they had accidentally scheduled us for an office visit - BIG difference! Grrrrr!
When we tried to fix that little hiccup there were no more openings for this month. And because the doctor only does infant surgeries one day a month, the next available day would be October 8 - the day after we leave for our trip to GA, and sometime around his next big fever cycle. Double Grrr!!
And since we can't do that one, the next available day is November 12. I had thought the cycle he is in this week was going to be our last one, now I realize that we have three more to go through before we can get his surgery to hopefully end them. Triple Grrrr!!!
So I went ahead and filled the steriod Rx and gave him the first dose tonight. It didn't do terrible things to him like I was worried, but it did give the poor little man a lot of nervous energy. He kept laughing and moving and wanting to be held but needing to be down and moving. He finally passed out a little after midnight and we'll see what kind of a night we have tonight. He is scheduled for another dose in the morning and then supposedly his cycle should end for this go-round. This med was also trying to be used as a diagnostic tool to verify that he does in fact truly have PFAPA, so I guess since we are trying it out we will have the chance to see if it works.
3 comments:
Awwwww!!! I'm so sorry, Kris. I know you were really hoping for a quicker fix than this and that you didn't want to keep Emmy on steroids. I hate it when things like this happen and there is just absolutely nothing you can do about it. I second your "Grrrr".
Hang in there kiddo. I know how disappointing it is to 'think' you have everything 'lined up' then someone else drops the ball. Then it becomes their failure to properly plan and prepare is now your problem...just doesn't seem fair does it? You have the right attitude about seeing if it really is what the Dr. thinks it is and if the steriods are possible temp. fix as they said. That has to be a hard decision (the surgery) to make in the first place, but you've got to believe you're making the best possible choice for the baby. Nobody said being a parent was going to be easy now did they?:) Love ya Sunshine!
Drugs can be our friend!!!!!!!!!!
Poor little fella! I kinda had to laugh at your description of him, running around, crazy-eyed and hyper. Poor little critter was just wore out after all that!!
(I wonder if he feels like a guinea pig???)
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