Hospitals, surgery, codeine...been there, done that

Hospitals and surgery don't really bother Brian, probably because he's been there, done that.  He was born with a cleft lip (not palate) and had his first surgery when he was 3 months old.  He had his second when he was 5 years old.  The hospital did a wonderful "Pre-Op Party" for kids who were having surgery, which included test-driving a kid-sized Jeep that they would get to drive into the operating room on surgery day (I have pics, but I have to find them).  We also had him watch a video called "Big Bird Goes to the Hospital."  When the anesthesiologist asked him if he was allergic to anything, he replied "Cheetahs and crocodiles."  

When he was 10, he had a blocked parotid gland, which is a minor thing, except for the excruciating pain.  While waiting for his CT scan, he was slumped over in the wheelchair with his IV, moaning "Codeine....codeine..."  He had to stay overnight, and when he discovered that they had Nintendo and unlimited chocolate pudding (and yes, codeine), he didn't mind a bit.  

When he was 17, he had his last lip surgery, which made him look exactly like Homer Simpson for a couple of days, so I giggled every time I looked at him (again, I've GOT to find those pics!).  He got really mad when he realized that this last surgery was a purely cosmetic revision (apparently he thought it was something medically required), but he did admit that it made a big difference in how he looked.  

When he was 21 he had a pilonidal cyst removed, which meant he had to wear a wound vac for six weeks and have wound care appointments three times a week during that time.  He developed a staph infection after 3 weeks and MRSA just as he was finishing his wound care appointments. 

Compared to that last experience, he sees this surgery as a piece of cake (and it probably will be).  He has a high pain tolerance and trusts his support team of doctors, nurses and parents, so he doesn't get particularly stressed about it.  He desperately wants to be able to sleep and feel rested.  His chronic sleep deprivation is probably at least partly the cause of his type 2 diabetes, and it certainly doesn't help his depression or his coping skills for his Asperger's and ADHD.  This surgery could mean the difference between living at home forever or being able to be independent and supporting himself.  It's HUGE.

So, all that to say, WE'RE PUMPED!  We've already bought him a personal-sized whiteboard for when talking is difficult, and a bag of gelato spoons for when he can barely open his mouth.  We're planning a Chewing Party in about 3 weeks, with all his favorite foods.  I've started my to-do list and the shopping list.  We'll probably have a few appointments between now and the surgery, between the surgeon and the orthodontist, so I suspect the time will fly. 

Brian's first post

People have been wanting me to post about my sleep apnea and my feelings on the surgery so here's a rundown of my thoughts so far.

 

I'm not really that nervous about the surgery itself. That's going to be handled by professionals and I'm going to be asleep for it, so that's good.

 

My main concern was really that my jaw was going to be wired shut, which would make it hard for me to eat since I'm diabetic, but now we know it won't be held so tightly shut during my entire recovery.   I'm pretty relieved about that.

 

As for how it will effect my overall health, though?  Sleep apnea has been affecting me for years by now, and I'm excited to see how much things will improve for me.  My memory hasn't been as good as it used to be, and sometimes I forget things over the course of minutes. The fact that I don't have any schedule also doesn't help, but one symptom of sleep deprivation is memory problems, so that's exciting.

 

I like the prospect of having more energy.  Some days I can manage staying up fairly late, but other days I can't even make it to 9PM. Sometimes I would even go to bed at 7. 

While my mood hasn't been particularly bad, it has been spotty and kind of listless on some days, so I look forward to being happier overall. 

 

But more than anything, I feel like my life has stalled the past few years. Not that I had a lot of drive before, but it's gotten pretty bad. It's hard for me to maintain motivation to do things across a single day, much less over the course of a week or month. But I hope that now, once I get my surgery and my ability to sleep improves, I'll be able to go back to school, maybe get a job, that sort of thing.

 

So, yeah, I'm pretty excited.

WE HAVE A FREAKING DATE!!

After two years of orthodontia and two months of sorting out surgeons and insurance, we have a date at last!  February 24th is D-Day.  Brian has promised a blog entry today.  That will probably involve a lot of nagging on my part, but what else is new?  <happy dance, happy dance, happy dance>

Quick animation showing what Brian is having done

Surgeon consult--things are starting to move!

Things are moving at last!  Today we met with our new surgeon, Dr C, who was very easy to talk to, and got the ball rolling.  We had already had the surgery approved by the insurance company back in November with our previous surgeon, Dr T, but he had to back out for reasons too long to explain and he sent us to Dr C, his former partner.  Dr C will now contact the insurance company for the official approval for HIM to do the surgery, which he said is a formality and could take a week or less. 

Basically, he will cut Brian's upper jaw loose, through his sinuses, and move it forward 8 mm and tilt it down just a little.  Then they will cut his lower jaw (a chisel was mentioned at some point) and move it also forward and down a little.  They will cut a square of bone from his chin where his tongue attaches and pull it forward a little and screw it into place to move his tongue forward. 

Dr C told Brian that he will be in pain, but most people feel much better in that regard within 48 hours.  However, he said "You WILL be miserable for a week.  Your mouth will be gunky and gross, your throat will hurt, you'll be drooling, you'll be swollen, and you'll wonder why you ever decided to do this.  You'll be thinking 'just shoot me now.'  But you're not doing this to feel good for a couple of weeks, you are doing this to feel better for the rest of your life." 

On the bright side, his jaws will NOT be wired shut!  They'll be securely rubber-banded shut, so he'll be able to open his mouth a little, but he won't be able to chew anything for several weeks.  It will be liquid-only for a week or so, then he can work up to yogurt, mashed potatoes, etc. 

As I'm typing this, Brian is on his way to get some kind of CT scan of his head, which Dr C will use to build a 3D computer module of what they want to do during the surgery. 

And...now we wait, again, until the insurance company responds and we can set a date and find out what hospital we'll be scheduled at. 

Tonight, it's steak for dinner!

 

The Basics

Here's the nutshell:  this blog will be about the experiences of Brian, my 23-year-old son, as he goes through the process of jaw surgery for severe sleep apnea.  It will also be about MY experience of this process as a mom.  I've read a lot of blogs written by people who've been through this, and it's helped me a lot to mentally prepare for this.  Brian has read NO blogs, because he's not sure it will help him right now.  Brian has been diagnosed for years with Generalized Anxiety Disorder, Major Depressive Disorder, ADHD and Asperger's Syndrome.  The idea of hospitals and surgery doesn't bother him at all, strangely enough, but he is a little worried that reading the blogs might make him anxious.  He is glad that I'M reading them, though, and agreed that we should blog our experience in case it would help someone else.  I don't know how much he'll actually write himself, but he's not shy about expressing his opinions, so this won't just be a Mom-blog.  

Brian's Asperger's makes him anxious about new situations, too much noise, too much chaos, not knowing what he's supposed to do in a situation, and he also is sensitive to textures, in clothing, food, etc.  He's also terrified of needles, which has nothing to with his Asperger's and everything to do with the time that I spilled a container of straight pins in the carpet and didn't find all of them.  He was about 5, and stepping on a straight pin has apparently traumatized him for life.  He still scowls at me when he thinks about it.

Stay tuned!  We're seeing the surgeon in two days, and then we'll know when the surgery will be.  In the next couple of days we'll post photos and give you some background.  I'm going to try to make the posts short so you can skip over anything you aren't interested in.