Five weeks post-surgery

Tor wasn't really cooperating here, hence the straight face! He actually can smile. But here are the latest photos.

After three weeks, our biggest concern was weight loss. He claimed to weigh in at 120 (!!) which would have been 15 pounds down from pre-surgery. But a week later he was at 127, and now he's up to 128... so we're hoping for him to gain it all back--and more, if possible!

After three weeks, he was able to have pasta with meat sauce, which was a real improvement over mashed potatoes and gravy. And he's been able to cut back on the peanut butter milkshakes, although those are still a good idea for weight gain.

We're hopeful that we're now on the final trek to complete recovery. Tor is supposed to do some physical therapy to stretch his jaw. I'm afraid he's not as consistent about it as we'd like. But he's back at school and the workload is building--as well as the pressure to get college applications started. So there's a lot on his plate!

New pictures from August 5 -- 10-days post-surgery. Looking pretty good!

Six Days Post Surgery

The adventure continues.

Tor felt pretty low on Saturday, but he's been asking for hugs to help him deal with it, and he says that helps a lot.

Getting Tor to eat enough is still a challenge. Last night, though, he managed some diluted mashed potatoes and even a little bit of sole meuniere (dissolved on the tongue). He's very tired of sweet shakes (especially chocolate), and was glad to have something savory. According to my notes from our pre-op appointment with Dr. Schendel, he is now entitled to move from a pure liquid diet to a "no chew" diet. This opens up more possibilities. Hopefully he'll get his caloric input up.

He has stopped taking the narcotic pain meds (he hated how they taste and they made him very sleepy). And he doesn't really need tylenol or ibuprofen, but takes them occasionally. We're still trying to keep him on track with 20 minutes of icing every hour. It's amazing how time flies when all you do is ice, sleep and eat.

Three days post-surgery

I repeat: It's great to be home. But now we start the long-haul of feeding Tor liquids and then soft foods for a few weeks.

The eating process is laborious and can be a bit frustrating. Tor is not allowed to use a straw, and his face is still a bit numb (as well as swollen). So he uses a large syringe with a tube at the end. He sucks the food up into the syringe and then injects it into the back of his mouth. Because he doesn't have much feeling in his lips, it sometimes dribbles back out. But he's getting better at it. This morning's oatmeal (blenderized with milk and brown sugar) and muscle milk didn't dribble out at all.

He got up several times in the night to ice his face and take pain meds. So he's still tired. But that's to be expected. I think we'll start to get into a routine today.

Here are the latest photos. Some of the swelling is definitely down. And after today we should see more improvement.

We're Home!

It's Thursday (two days post-surgery) and we're home! Things were going well yesterday, so this became the new "plan"-- to get him out of the hospital today.

Yesterday they took him off the IV because he was able to take pain meds orally. And his airway is staying nice and open. The reason to stay in the hospital is that they worry about airway swelling. But when I went to the hospital at 7:00 this morning one of the doctor's was there and he stuck a scope down Tor's nose to look at the throat. He declared it open and therefore okay for Tor to go home.

And was Tor ever ready to get out of there! Hospitals are noisy places.

Tor's biggest complaint right now (physically) is that his nose is stuffed up. That's part of what happens because of the swelling. The upper jaw is right below the nose. His mouth and nose are also dry. So they give him saline nasal spray and mouth rinse.

I actually think the facial swelling is down a bit.

It's great to be home.

A brighter outlook

Last night, Tor wrote on his white board "this is pretty rough." And this morning he wrote "Last night was pretty bad." But he feels somewhat better now. He has color back in his cheeks, he had some juice from a cup rather than a syringe, his catheter is out and he was able to pee on his own (hooray) and he's now watching Iron Man 2, one of his favorite movies. So I think things are looking up. Although now I look over at him and his eyes are closed with the movie on!

The nurse will be back shortly to get him up and walking and we'll go around the hall. That alone should give him a better feeling that things are on the uptick. And his "Full liquid" breakfast just arrived. So that means he's already allowed to eat things that aren't just clear liquids. So he's got some cream of wheat and milk. Will see if he wants it...

That's all for now!

Pretty swollen!

He's still Tor, but he looks a little different. Big chipmunk cheeks from the swelling. But I can also tell that the chin is further forward. At first glance, he looks more like his cousin Ryan than he did before! (Hi Ryan, I hope you're reading this! I don't think it's because you have chipmunk cheeks!)

He has an ice pack tied around his head that makes him look like an eskimo with a furry parka on. And he's snoring. Oxygen saturation is staying nice and high. The doctor said that he has a very nice big airway now, but the swelling might reduce that for a time.

Right now, he's getting some morphine and a steroid that will help a little bit with the swelling, but not much...

still waitin'

Recovery room is taking a while!

Surgery's done!

The doctor came out at about 11:15 to report that all went well with the surgery. Tor is now in recovery for 1-2 hours. More later.

Now waiting...

Tor went into the OR at about 7:40, but we're told that the surgery started at 8:23. So the 3-4 hour estimate for the surgery runs from then. We'll be looking for the doctor to come talk to us between 10:30 and 11:30. Tor might be going to the ICU-- just if they want to watch for swelling of the airway. If so, we won't have a lot of visiting time with him (a half hour every two hours or so). But we'll find out about the ICU decision when we see the Doc. Not much to do now but wait!

Surgical Simulation

Here is the before photo with the surgical simulation (below) of Tor's new profile! Looking good!

What to Expect on Tuesday

On Tuesday, we have to be at Stanford Hospital at 5:45. The surgery is scheduled for 7:30 (but this still might change on Monday). The surgery will last about 3.5 hours. The doctor will then speak to us, but Tor will remain in recovery for 1-2 hours while he wakes up. After that, he'll be moved to his room and we'll get to see him. So we anticipate that we'll see him by 1 pm.

Tor's jaw will not be wired shut. He will be able to open it. But he won't be talking for a few days and he'll be on clear liquids at first. We've been given a small white board for him to use for communicating.

Tor will stay in the hospital until (probably) Friday. The swelling will gradually increase until day 4, after which point it will start to go down. Swelling will be reduced by 80% at day 10 and 100% by 2 weeks out. So that's when we'll know what he really will look like!

Before Tuesday, we expect to receive a computer rendered prediction of what Tor will look like after the surgery (which is called maxillo-mandibular advancement). But essentially, his lower jaw will be moved forward about 1.5 cm and his upper jaw will move out and tilt so that it's at about 1 cm further forward. The surgeons will also pull the tongue forward (genioglossus advancement). It will all be done so that his bite will remain what it is now. The orthodontist will continue to adjust the bite over the next few months. His braces will come off by graduation time.

Four days Pre-Surgery

Tor is playing on his XBox, still blissfully unconcerned about what will happen on Tuesday. His parents, meanwhile have started losing sleep! It's a big thing to sign off on a form that lets a doctor cut into your son's jaw bones. But we've done it. Why? To open his airway in hopes that Tor's energy level will be more like that of other teens; that he will find it easier to study and learn; that he'll feel he can remember what he studied the day before a test (he currently says that sometimes it's just "gone"); and that, unlike his paternal grandfather (Ron) and maternal uncle (Buzz) he won't spend most of his later years napping; and that he won't need a CPAP machine to have a good night's sleep for the rest of his life. There are also the orthodontic/cosmetic issues that suggest this is the way to go: to bring his jaw into alignment with his face (he now has a receding chin).

So we're proceeding with this surgery on Tuesday, July 26, 2011 at 7:30 a..m.. And we've got a good Doctor: Schendel, associated both with Stanford and with the California Sleep Institute.

Here's a before photo of Tor. I'll post after photos later!