We are such bad bloggers.

Apologies.  We really will catch up.  He's doing really, really well.  For now, here's the short list of things to note:

1. Brian says his bones itch where they were cut.  I believe him.   
2. He has requested pepperoni pizza soup for lunch tomorrow...which we will have to invent, I guess.  There is no problem with his appetite, trust me!  His 2 favorite meals right now are refried bean soup and peanut butter smoothies.
3. He is still using the oxycodone regularly, alternating with ibuprofen, but I suspect he tends to hyperfocus on the discomfort.  We're going to try using his Xanax twice a day and see if that cuts down his pain meds.  
4. His sinuses are still draining blood, mostly when he showers, which is gross.
5. Mega-drooling.  Also gross.  But also funny (don't tell him I said that).

Most importantly of all, I haven't heard him snore ONCE since he came home, even with all the swelling!

Surgery Day, Part 1

The short version:  He did great. He'll blog tomorrow.

The long version:

We arrived at 0700, checked in at the front desk, and then sat and waited in the lobby.  Then we registered and made a deposit on our bill, and were taken to the surgery waiting room, where we checked in again, and sat and waited.  Then we went back to the pre-surgery area into a room, and waited.  Then Brian went off to surgery…and Bill and I waited…for about 8 hours. 

As we were sitting in the first lobby, I remembered that the hospital had sent a pamphlet about a living will and medical power of attorney.  I gave it to Brian, who started reading it and said “Man, this is kind of heavy to drop on me NOW.”  I suggested he skip the living will part and just sign the medical power of attorney on the back so his dad and I could make decisions for him when he was unconscious.  He thought that was a great idea…and it turned to be very helpful later, but not in a bad way. 

While he was in pre-surgery, waiting, I asked if he had any thoughts, and he thought this photo summed up his feelings at that point in time. 

He did pose for a more cheerful photo, though.

Later on I gave him a chance to say anything he wanted on camera, but naturally, he couldn’t think of anything to say.  (Brian growls at me when I try to listen to the videos, so if necessary I'll do some captions tomorrow--I guess he wants to sleep right now)

A little later, wearing an attractive hat, and having a dose of Versed on board, he was feeling more verbose.  I missed the part where he went on at length explaining what a “fetch quest” was and how having this surgery was like a fetch quest.  That would have been GOLD.  But instead, we just got this short.   Mid-video, the nurse realized Brian had never signed the consent forms for surgery and anesthesia!  

Actually, the best video event never happened.  The nurse was going to give him his Versed, and the anesthesiologist asked her to wait until after he’d done his Afrin spray.  Now THAT would have been gold, if we’d had video of Brian, post-Versed, trying to use a nose spray!  But sadly for us, Brian did the nose spray first and then got the Versed.

So Brian was wheeled away to surgery, and Bill and I went to spend the day in the surgery waiting room.  Strangely enough, it wasn’t bad.  The waiting room is a long narrow room, broken into seating areas, some with recliners, some with TVs, etc., and they had a microwave, coffee, hot chocolate and tea.  The staff even came around once with a basket of warm cookies!  Just outside the waiting area was a Scooter’s, so I had a mocha and a scone.   Lounging on a sofa in a bright sunny room, drinking a mocha, eating scones and warm cookies, crocheting, sometimes reading…yeah, it was rough.   What really helped make it easy was the way the staff kept us in the loop.  When we first got there, they gave us a pager like restaurants use for waiting lists, and gave me a badge with Brian’s patient number on it.  Whenever they had info for us or it was time to go into preop or talk to the doctor, the pager would light up and vibrate.  Cool! 

About every 90 minutes, we’d be given an update.  We knew it would be at least a 4 hour surgery, so when they told us they’d gotten a late start due to some issues with getting him intubated (not a medical issue), that was good to know. 

While we waited, I finished crocheting this guy for Brian.  

He was a big hit in the waiting room.  He’s wearing the badge, making him Brian’s official waiting room contact. 

Around 2:30, we got a message that they had finished both jaws and were working on the tongue advancement.  About 20 minutes later, the surgeon showed up to fill us in.  He said everything had gone very well, and between the lower jaw advancement and the tongue advancement, they were able to move his tongue forward almost ½ an inch, which is huge in terms of airway! 

Instead of 1-1/2 to 2 hours in the recovery room, it was more like 3 hours, but again, because of the excellent communication, we knew that it was taking longer because the anesthesiologist was evaluating Brian to make the decision whether he’d be moved to ICU or a regular room for the night.  That decision would be based on how he was doing with the swelling, in combination with his existing sleep apnea, and how much monitoring they felt was necessary.  They assured us that Brian was doing great, was  awake and responding to questions.  In the end, they decided to have him go to ICU, which I was very happy about.  I wanted as much monitoring as possible! 

At that point (6:00 pm), I went home to change clothes and feed the dogs, and Bill went up to the ICU waiting room.  

Part 2 tomorrow...

Are we ready? I think we're ready.

Brian's last solid meal until April:  Cornish pasties with gravy.  Beef, onions, potatoes and turnips in a crust, with onion gravy.  After the first couple of  bites, he looked at the clock and asked, "What time do I have to stop eating?"  Midnight.  We have to be at the hospital tomorrow morning at 7 am.

I got carried away with the chopping and ended up with too much of the onions, potatoes and turnips, so I put it in a skillet with some frozen hamburger patties and made what will become pastie puree in a few weeks.  Brian was kind of touched that I had made that, instead of weirded out.  We'll let you know how that turns out, once he graduates from liquids to mush.  

I sorted Brian's things into what needs to go to the hospital (dry erase board, bed organizer, etc) and what stays home (mirror, gelato spoons, etc).  I told him he should pack just some toiletries, and then I realized they won't let him shave, even if he wanted to, and he won't be able to brush his teeth, so I guess I'll just toss his deodorant in my purse.  He is going to make sure his phone and iPod are charged up, and he'll set up his electronic toys in the family room tonight, since he knows his dad and I are hopeless at that.  

We've got jello, pudding, broth, frozen fruit, and plenty of baby food in the fridge.  

I'm going to spend the night at the hospital with him, partly for my own peace of mind, but mostly so I can see how and what he does, and what's normal.  They might send him home on Wednesday, and I'd feel a lot more comfortable with that if I've seen how it all works.  

Brian has agreed to address his attentive public via video tomorrow morning before the surgery, so stay tuned!

(Gratuitous cute dog photo)

@$&%@##*

Brian has a cold.  He's only had about 3 colds in his entire life, but of COURSE he gets one now.  He was pretty sick Wednesday, with spiking blood sugars on top of everything else.  By the next morning he felt normal, except for the nonstop drainage.  This morning I dosed him up with hot tea and decongestants before I left for work.  I have a call in to the surgeon to see what he wants us to do.  The nurse said he'll probably want him on an antibiotic and Mucinex for the weekend, which sounds reasonable.  Just NO DELAYS, PLEASE!

Update:  The doctor called in an antibiotic, just to be on the safe side, and recommended a Mucinex regimen for the weekend.  He didn't think it was anything to worry about.  Yay!!

S-7 days

The countdown begins:  today Brian had his surgical hooks...installed?  Put on?  Something.  Anyway, those are the things that will be used to secure his jaws shut after surgery.  He got the flossing lecture, which he's used to, because he never flosses.  He says he will work on that this week, to get his gums ready for action.  

We had barking pig tacos at Unforked for lunch, which started the list of "last" meals for this week:  Cornish pasties, medianoches (Cuban sandwiches), and tuna patties.  There's also plenty of leftovers from his Chewing Party in the fridge.  He won't be hungry THIS week!

I stocked up a little for his personal pantry.

I also finished up his bedside caddy for the hospital, which will hold his phone, iPod, and dry erase board.

There's really not much else to do to get ready, until the day before surgery when we'll get his recliner-world set up in the family room.  Wow.  It's so weird to finally be at this point.

The Chewing Party

We had Brian's "Chewing Party" tonight, with friends who came to eat Brian's favorite foods with him while he can still chew.  It wasn't exactly a balanced meal, but who cares?  We had lamb curry and rice, lasagna, pulled pork, a Gigantor pepperoni pizza from Minsky's (26" wide!), veggie pakora, pickled okra, and pickled asparagus.

Then for dessert we had Death By Chocolate, apple square, chocolate cheesecake, and golub jamon.  

After we all ate too much, Brian opened his "gifts," all things I'd read about on other people's jaw surgery recovery blogs:

a bamboo serving tray, gelato spoons for when he can't open his mouth very wide, and a sample pack of Shakeology protein shakes

a hot/cold pack that he can wrap around his face after surgery, a custom sleep mask and earplugs for trying to sleep in the hospital, baby toothbrushes for when he's able to TRY to brush his teeth, and drool towels

a mirror for feeding himself when his face is numb and he can't find his mouth, A&D ointment for swollen face, and a bell

a not-yet-finished bedside caddy for his phone, iPod, and personal-sized dry erase board for the hospital (it will hang on his bed railing once I finish it)

a "make your own flashcard" kit for when he can't talk and gets tired of writing the same answers, with a couple pre-made cards

Brian really enjoyed talking to everyone.  He's never really comfortable in a group of people, but I think this was the most relaxed I've seen him at any gathering.  I wish I'd taken photos of everyone, but I'm terrible as a photographer because I'm too busy talking! 

Almost ready--or are we?

So.  Brian had his pre-surgery lab work, which showed his liver enzymes were elevated.  That was no surprise, with his type 2 diabetes, all the meds he takes, and his awful diet.  Undoubtedly he has a fatty liver, just like his dad.  Just to make sure, the doctor referred him for an abdominal ultrasound.  Sure enough, fatty liver.  However, his spleen is also enlarged.  This is a problem.  No surgeon will operate on someone with splenomegaly without further testing.  Since all Brian's other blood work was normal (no elevated white cells, etc), it's probably nothing serious.  The big issue is establishing that it's okay in time to have the surgery. 

Maybe we should be more worried about his spleen, but with no symptoms at all, and normal blood work (except for the liver enzymes), I have a hard time believing it's anything serious.  Brian's never had anything normal in his life, so of COURSE his spleen would be enlarged.  We'll see a GI specialist this coming week and hopefully that will be that.

Bill did point out that Brian could have mono without even knowing it, since he's so tired all the time anyway.  That's a good point, but again, no elevated white count?

In the meantime, we're going on as planned.  Today I took off half a day from work to clean and cook in preparation for Brian's Chewing Party tomorrow.  I started to make the cheesecake and realized we are completely out of flour.  Bill is running errands now, and I've been doing other things around the house until the flour arrives.  I wrapped all of Brian's "gifts" for the party, which will make up his Surgery Survival Kit.  I'll post some photos of that tomorrow.

Back to cooking and cleaning!

The surgery train is picking up speed...

It's starting to become real--two weeks from tomorrow will be Surgery Day!  Brian had his pre-op lab work, which was all terrible, in terms of cholesterol and blood sugar and all that.  No one was surprised.  He's chronically sleep-deprived and lives on peanut butter sandwiches.  Just to be on the safe side, his doctor ordered an abdominal ultrasound to make sure his liver was okay.  He enjoyed the pebbled water wall at the Medical Pavilion while he was waiting.  I wonder how long he would have sat there watching and listening to the water if they hadn't called him in?

It took longer to sign in than it did to have the ultrasound!  I'm pretty sure it would have taken longer than 15 minutes if there was anything wrong with him, so that's another thing to check off the list.  The doctor made some adjustments to his meds with the surgery in mind.  We still need to sort out how to handle his meds post-surgery.  Some can be crushed, some are capsules that can be opened, but others we need to check on. 

 We've ordered the protein powder, and I've started assembling a survival kit, with drool towels, gelato spoons, a hot/cold pack he can wrap around his face, etc.  The main order of business this week is getting the house cleaned and the food organized for his Chewing Party on Sunday.  I'm actually making lists of things to buy, things to do, things to take to the hospital, things to get ready at home...I might be freaking out just a little bit.  But once I have my lists, I'll be fine. 

Why Brian is having this surgery, in 34 seconds

Turn your sound on, and I apologize for the background static.

Click here to listen to what sleep apnea sounds like

I recorded this one night because Brian didn't understand why I would come in his room and make him roll over.  He knew he snored, but he didn't understand how bad it was.  

And now, we wait...

We started this process two years ago, when Brian got the necessary orthodontia to move his teeth into the correct positions for post-surgery.

Now, the goal is in sight--but we have nothing to do!  He had his checkup for surgical clearance, and one last check with the orthodontist.  We've been looking into how he's going to eat after the surgery.

He taste-tested a couple of brands of protein powder and decided which one he preferred.  And we took a couple of pre-surgery mugshots.

Those are pretty ugly, so here's a couple of cuter ones:

In the next 10 days we'll be preparing for his Chewing Party, and then things will move along.  He'll get his surgical hooks on his braces on the 17th, with surgery on the 24th.

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.