So, we're three weeks out from our surgery and Nickolas seems to be healing well. Our first post-op went really well and we have another next week. He did have some trouble with his breathing, but nothing that we weren't prepared enough to handle.
We were well prepared going into this surgery that while for some kids, it's a miracle, but for Nickolas, it might not be. As I've traveled this long, bumpy, winding road I've always tried to stay positive. I always say, it won't do me any good to cry.
This time was no different, I tried to remain positive that Nickolas would prove the doctor's wrong and this would be just what he needed to make a turn. This time, like so many before, Nickolas proved that he's not like the other kids and we've seen no real improvement. And unlike all the other times, this time, all I want to do is cry. We try everything they suggest in hopes that one small thing will be even one small step towards normalcy for us.....and nothing ever seems to bring us any closer.
During his first post-op, the doctor told us in her 5 years, she's only had to repeat the surgery on 2 kids.....but that if she had to classify those 2 kids, they'd be a lot like Nickolas. So, we may see another surgery somewhere down the road.....we'll have to wait and see.
We're also scheduled to see an Immunologist in St. Pete in December. Oh December seems SO far away right now. I'm trying to remain positive....this is what we need. Someone who knows the immune system to help us figure it out! This past week, during an episode of Private Practice, I wanted to break down in tears....there was a real-life (well, as real as you can get on a tv show) bubble-boy. I often feel like that's our life....and while I know that's far from the truth, some days, I think it would be easier to handle it all if he had to live in a bubble.
So....we still don't sleep through the night....we still have nasty headaches and nasty stuffy noses....and of course, the breathing issues. So, we're still waiting for any answers....any help....no matter how small it may seem. I'm tired of antibiotics, steroids, and X-rays....I'm ready for birthday parties, playgrounds, and play groups.....but, I'm still waiting....and I'll keep waiting until at least December for answers.
We were well prepared going into this surgery that while for some kids, it's a miracle, but for Nickolas, it might not be. As I've traveled this long, bumpy, winding road I've always tried to stay positive. I always say, it won't do me any good to cry.
This time was no different, I tried to remain positive that Nickolas would prove the doctor's wrong and this would be just what he needed to make a turn. This time, like so many before, Nickolas proved that he's not like the other kids and we've seen no real improvement. And unlike all the other times, this time, all I want to do is cry. We try everything they suggest in hopes that one small thing will be even one small step towards normalcy for us.....and nothing ever seems to bring us any closer.
During his first post-op, the doctor told us in her 5 years, she's only had to repeat the surgery on 2 kids.....but that if she had to classify those 2 kids, they'd be a lot like Nickolas. So, we may see another surgery somewhere down the road.....we'll have to wait and see.
We're also scheduled to see an Immunologist in St. Pete in December. Oh December seems SO far away right now. I'm trying to remain positive....this is what we need. Someone who knows the immune system to help us figure it out! This past week, during an episode of Private Practice, I wanted to break down in tears....there was a real-life (well, as real as you can get on a tv show) bubble-boy. I often feel like that's our life....and while I know that's far from the truth, some days, I think it would be easier to handle it all if he had to live in a bubble.
So....we still don't sleep through the night....we still have nasty headaches and nasty stuffy noses....and of course, the breathing issues. So, we're still waiting for any answers....any help....no matter how small it may seem. I'm tired of antibiotics, steroids, and X-rays....I'm ready for birthday parties, playgrounds, and play groups.....but, I'm still waiting....and I'll keep waiting until at least December for answers.
No comments:
Post a Comment