upcomming surgery

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It is already may, and the ned of June/beginning of July my 6yo son will be having a bone graft in his upper jaw to repair a cleft palate he was born with. this is far from his first surgery, but the others he was either too young to remember or the surgery wasnt that involved. This one is very involved. They are deciding on graft site of his hip, or a synthetic protein (no graft site), but I dont know which one yet. Either way, he will be on limited physical activity for a month, basically they want him on the couch that first month. He will be on a liquid diet/soft foods diet for 3-6 weeks post op. My son HATES soft foods like yogurt, pudding, apple sacue, smoothies, masehd potatoes, etc...

SO, basically he is going to have a miserable summer and it is going to be extremely hard to keep an active child down for so long and eating food for so long that he hates.

I am taking him to his therapist today, in hopes that we can start him on more of those soft foods now so he can tolerate them by the time he has surgery. I also want her to work with him on his feelings and emotions surrounding the surgery. The las ttime we spoke of this at his psychiatrist office, he seemed ok with it all, but later int he day had a MASSIVE meltdown over a broken video game at a freinds house. I wonder if it was due to the info about his surgery he didnt seem to process.

he has aspergers, and I just am so worried about his emotional state when this all happens. I worry about how I am going to manage him, he is also a heavy chewer...he has chewies, etc...and I have to make sure he keeps EVERYTHING out of his mouth, risk to the bone graft not taking and having to repeat the graft.

any ideas?

Hi Dara -

I don't have any great ideas for you, but I wanted to share some thoughts about post op pain.

I've had a couple of surgeries where I thought it would be a challenge to lay low as directed. What I found is that I felt so crappy, it really wasn't a challenge at all. I hurt way too much to move. I love the saying, let your pain be your guide, meaning that you can do as much as you feel like doing. For that to work, you can't be on big pain killers, because then you think you feel better than you actually do. I don't tolerate pain meds too well, so I end up moving very slow.

With the food, that will likely be a challenge. How does he do with protein shakes and ensure, ice cream & Popsicles? I would try some things now, but just figure out how to get some nutrients in him. I know it's rough with my son when he's hungry but doesn't want the available choices. He won't just eat it anyway.

I have a vitamix blender and it is very cool for making foods like this. When I make smoothies, I'm able to add whole apples and carrots. Perhaps if your son could be involved in recipe development now, it would be novel and fun? The vitamix is expensive but really cool.

I would have suspected the meltdown was due to stress and worry about the upcoming surgery, and not really about the game at all or the game was just the straw that broke the camel's back.

I'm a 25 year old adult and have oral sensory needs. I've destroyed several expensive Wacom Tablet pens by chewing on them. Stim toys for autistic children are too soft for me. I need something HARD. The best thing I ever tried was a chew toy meant for dogs that are powerful chewers. I've noticed I don't feel the need to chew if I have something to drink on hand. I always have a water bottle not far from me. Maybe if you got your son a water bottle and let him drink from it whenever he wanted and showed him how to refill it when it was empty, he might be too distracted to want to chew. Plus, all the hydration would probably be good for him. With any stim I've ever had, distraction was always the best way to overcome it or at least stop it for a while. I'm almost always working on my art and had a knuckle cracking stim to the point, my knuckles were sore. Painting helped me get my mind of the desire to crack them. I work both with digital and real media (mostly watercolors) both help me keep my mind off my need to stim or whatever I'm worried about at the momment. Does your son enjoy drawing or painting? I think I recall you saying in another thread that he loves video games to the point of obsession. Maybe you could let him play until he heals? Just a suggestion...

Thanks!

yes we plan on letting play vidoe games and watch TV for a month...hey, maybe he will get sick of it? One can only hope! As for the chewing...it is terrinle, he will chew his hands, fingers, sleeves, collars or necklines of shirts, even his car seat belts...NOTHING is off limits. He would even chew his belt in karate or the draw strings on his pants.... I worry most about that. His therapist appt went really well, he chose 2 new foods to try tonight that are soft and things he refused in the past. he told his therapist he will try new foods daily and report back to her how it went.

As for pain, I am sure the first week he will be sore and in pain and not really want to do much, but he has to be on limited activity for a month, and his diet for 3-6 weeks. SOOO, he will start to FEEL better but stil has to lay low and eat the soft foods.

He has refused pain meds in the past, for his last surgery he refused to take the RX pain meds, and only tylenol. This pain will probably be worse so he might change his mind about it. Plus he is a year older and I can get him to take a few things by bribery...lol

He hates to color or draw, he will paint but mainly to mix the colors and eventually gets overstimulated by it and will start rolling int he paint...literally. I can do some of that with him, but I think the video games will be a hit for him. we are buying him a Wii for the surgery, and he has been begging for one for a year now.

If you let him watch and play all he wants, he probably WILL get sick of it. Rolling in paint sounds like fun actualy. I'd love to be able to dip myself into a huge container of paint and then roll myself around on the canvas and make some abstract art.

Lucky kid! When I had my hystorectomy last year, I didn't even get a card. My brother sent me flowers but that's all I got. I'm not really into video games anyway but I've herd that Sonic Generations is good.

Isnt that Tails in your avatar? I will look for that game, he has a few sonic games and loves the sonic cartoons! He did GREAT last night, and ate a sweet potato...this is my childs 1st potato he has ever eaten, and gues what? He LOVED it! I hope he cooperates and continues to eat new foods, it iwll be one less shock after his surgery!

If you can afford an iPad, I would highly recommend one. Lots of great games, educational ones, too, for under $5 each. Great way to be still without being bored.

I am probably totally off base, but the question that entered my head reading all this was, "can the surgery wait?"

My son outgrew much of his chewing. But at the height of it - I don't think there is any way he could have refrained long enough for a surgery to heal. He was far too unaware of what he was doing.

Yes! He's my favorite Sonic character. Because he's so cute and because I find him so easy to relate too; not saying I can build airplanes and spaceships from scrap, but I can relate to a bullied "genius" type. I've never played any of the games since Sonic 2, because I found them too hard. I perfer to just watch the cartoons and draw pictures or write stories about the characters. I talk to other Sonic fans on Deviant Art and other message boards and they seem to think Sonic Generations is good. I've also heard good things about Sonic & the Black Knight and from what I've seen in the trailers, Sonic Colors looks like a fun game.

Oh yes, I can so relate to thinking I would hate a certian food, but actualy loving it once I gave it a try.

My child HATES soft foods. I had to "trick" him as a baby to get him to try ice cream, which he loved enough to eat. He will only eat sweet ,soft foods---other than melted cheese.

I would try to think about what flavors your child likes well enough that he might be able to tolerate the texture and concentrate on those, or parts of other foods (ie. melted cheese as a part of pizza or grilled cheese sandwiches----maybe, melt cheese quickly in a skillet before it burns--which might be more palatable than a cheese sauce. Yes I have done this)

This is so tough!