8 Months Out!

Well, it's been 8 months since Rhett's last surgery and he is making so much progress! He is taking steps on his own now. He has walked without help for about 10-15 steps. For long distances he uses the walker, but he has begun using arm canes. He likes it and it makes him use more leg strength, which is great. We are very happy with his ongoing progress and will meet with his spasticity team next month to evaluate. Yay Rhett!

Walking At Last!

Well, it's been about 6 months since the most recent surgery and Rhett is walking! He is a little bent, but that should get better with muscle strengthening over time. He is riding horses, doing therapy and walking all around the house. He doesn't use the walker much at home any more. He uses it at school when he needs to walk down the long halls, though. We are very happy with the results and are enjoying the progress. We know Rhett likes it, too. It's kind of easy to tell, when he refuses help as we walk into church and he yells out "Woo hoo! I did it, Grandma!"

Jail break

Rhett got out of the hospital on Tuesday October 26th. We were happy to be heading home. Rhett giggled when he first got home, even though he is still in a hospital bed in the living room. Over the past week he has escaped from his bed or wheel chair a couple of times, despite the doc's orders for him to stay on his back. He must be feeling better, or the drugs are working really well.

One month from today he'll have his follow up visit. It's going to be a battle keeping Rhett confined for a month.

Actually we're planning on sending Rhett to school this week, maybe just partial days to start. We'll see how it goes.

Hurl On

Don't you worry about us, we're in good shape. The good news - we get all of the chocolate milk we want! The bad news - Rhett decided to hurl it all over the place 3 different times!

Puke on me once, shame on you, puke on me twice, shame on me, puke on me thrice? Lock the fridge idiot!

Apparently dude is a little backed up, this was before the choco leche. A few suppositories, and he's a new man. Hopefully, he starts to keep his food down now.

Mark Daphne and Italia dropped by, no puking during the visit which is nice.

Rhett and I took a spin around the facilities in the wheel chair. It didn't last long, he couldn't wait to get back to his 6th viewing of The Shaggy Dog, apparently he's a big fan.

We should be heading home tomorrow, which is good. I'm due in Omaha tomorrow night for a quick business trip, Unless the storms keep me from leaving, which would actually be nice.

So far Rhett appears to be handling pain fairly well, maybe he's just used to it by now. I'd probably be balled up in the corner in fetal position crying mommy.

Well, hope we make it home tomorrow, lates!

Day 3 Surgery 6 - Epidural Comes Out Today

Rhett's been doing really well. After 5 hours of surgery, 17 different procedures, a toolbox of metal screws and brackets, Rhett has been pieced back together. I told the doc to just put some bionics in his legs and he'll be a superhero! or at least a super dance hero! He's been watching New Year's Rockin' Eve from 2010 and 2009. We record them every year because he loves to dance to the tunes: WillIAM, Black Eyed Peas, Kerry Hilson, Colbie Caillat, etc. It's killing him, not being able to get up and dance.

It's amazing how big he is now, growing up so fast! Here's a picture of him riding horses back when he was 4?

Rhett should be in the hospital through Tuesday. If you want to visit him, he's up at Shriner's hospital which is about 3 blocks north of South Temple and 14th East, Room 2.

Here We Go Again! Shriners Hospital Room 2

Rhett has made a lot of progress since I last posted. But earlier this year, during the summertime, he began to backslide. He quit trying to walk and seemed weaker. We were all perplexed, but after looking at x-rays, we realized his left hip was broken. It never healed right after that last big surgery, so after much wear and tear, the metal plate that was holding it in place broke. That explained his sudden loss of strength and mobility.
Thursday, Rhett underwent his 6th major surgery. Two orthopedic surgeons worked on him simulaneously for about 5 hours. This procedure included reconstructing the left hip (removing old metal, correcting the angle of the hip and then fastening a new, stronger plate). While he was sleeping, they also removed the old metal plate from the right hip, which healed fine. In addition, they addressed his severe pronation of his ankles. Currently, he's been walking on the instep of his feet. They screwed into his growth plate on the interior side of his feet to stop the growth and then lengthened bones on the exterior side of the feet. Now they should be more even and we should be able to see Rhett use the bottom of his feet when walking. Wouldn't that be something? :) Maybe we wouldn't have to buy him new shoes every week!

Here's a pic of the metal we took out Thursday, from his surgery last year. Guess we'll throw this in the tool box.

We will definitely keep posting how he is doing! Thanks everyone for your support.

Baby Stepping

Rhett is going to physical therapy sessions twice a week and I'm happy to report that they no longer lead to tears! Those first workouts are the worst (for Mom and Rhett)!

Sometimes we do regular workouts and sometimes he gets to workout at the pool, which he loves. He keeps telling his therapist, "Take your hands off me. I want to swim." I'm glad his therapist is a big, strong man because Rhett stands even taller now that his legs are not twisted. At home, Rhett spends time in his stander and also uses the walker on and off. His favorite thing he can do again is stand right by the stereo and dance all by himself.

The best part is we get to see improvement every single day. I'm glad it's coming so quickly for him. Next month he will begin riding horses again and that's a killer workout for him, plus he loves taking care of the horses.

Freedom at Last!

Rhett began school this week after a 5 or 6 week absence. We are all happy about that! When I took him to school on Monday an all the kids in his class ran up to see him, he looked up at me and quickly said, "Mom, how's my hair?" They had a big welcome back party for him and his friend, Jake, who'd also been absent. We love his class and teachers.

Yesterday, Rhett got both casts cut off! We celebrated by going directly to the next office where they recasted him for DAFO's (leg braces). Thankfully, those casts are only to get a mold of his feet and legs and were immediately removed! Rhett was a little worried, there, for a minute! Now he wears 2 soft casts and is much happier. When he came home from getting his casts off, we soaked him in a bubble bath. Of course it's nice to finally get those legs in some water, but I was just happy to get that constant "bed head" under control! His hair had been sticking up straight for weeks and we finally got to wash it. He looks like a whole new kid now!

Half Way There!

Well, Rhett has been off of his feet for 3 weeks now and he's sick of it! In fact, every time someone new comes over, he asks them if they will please lower the side rail of his hospital bed. I fell for it once, too! He throws his body off of the bed and onto the floor. Of course, this is painful, but he just wants out. I'm learning to use the adrenaline rush to scoop him up and put him back in bed. I don't know how my back will handle it, but luckily we're almost done with this phase of recovery. We did have one setback last week. Both hip sutures became infected. Chelli and I had to lift him to the car and take him to the doc's, but with meds they are looking good again.

At least now we have the real Rhett back. He is talkative and social again and if I climb in bed with him, we see lots of smiles. He's also happy to be in the wheel chair from time to time. He even made it to a little bit of church last Sunday.

Home Again! Post-Op Day 5

Rhett was released today! We were getting excited when he kept his breakfast down this morning. It was then we knew we'd get our walking papers. Good job, Rhett! Now, he's still in a hospital bed, but at least it's at home, in our living room. Even though it's not the best centerpiece for the living room, it's much easier to take care of everyone this way. It was hard for me to be at home, but thinking I should be with Rhett in Salt Lake and then when I was in the hospital with him, I'd think I should be home taking care of everyone else! Maddening!

So for the next 5 weeks or so, he has to do very little. He's allowed to do small excursions in his massive wheelchair (around the house) and sit in the bed. That's it. His feet are not allowed to touch the floor at all. This should be interesting!

We'll add to the blog when he's allowed to start progressing again, IF we don't die of boredom first. Thanks to all for the support and love!

P.S. This pic of him was from the other day. He's doing much better now.

Cloudy Haze - 4 days post op

Well things were a little foggy for 24 hours thanks to Oxycodone, he was either sleeping or crying. In an effort to take Rhett off of his Epidural we tried Oxycodone, which I hear is fabulous for some. However, Rhett didn't like it. He slept all afternoon and then watched movies and ate popcorn all night long!

We crammed some food down him this morning and he responded with some projectile vommiting, very nice distance! He even hurled while we were cruising around the hospital hallways in the wheel chair, too many wheelies maybe. A quick shout out to the nurses at station L for cleaning us up. Rhett complimented them on their efforts, he said, "good clean up guys!" I took the man down stairs to get my diet pepsi fix (better than Oxycodone), and Rhett saw the doors to the outside world. So, for twenty minutes we sat and watched the snow coming down outside and dreamt what it would be like to escape to the deep powder! Well, at least I did. Pretty sure Rhett was thinking about sharpening his bowling skills at Jack and Jill's. We then cruised back up to his room. We had to take the long way as station L wouldn't let us near their station for some reason...something about a drive by puking...pansies.

Doc Stotts saw the potential dependency and moved us from Oxycodone to Loritab. Rhett is doing better. He's much happier now, laughing at bad jokes while watching Hairspray...nothing like John Travolta dancing around in a massive pink dress, shaking this booty. Now I may hurl a couple of times. Madagascar 2 is up next, never seen it before. Thanks Ryan, Linds and Al for bringing him the DVD. Rhett's had several visitors. Bishop Jensen and Brother Atwood came by tonight and brought gifts. Chelli and Meg brought food and treats.

There's a decent chance Rhett may go home tomorrow. He has one objective tonight, find a way to take a "duke"... it's been 5 days! Apparently sitting in a bed all day on narcotics backs up the pipes.

History of Rhett's Blog - Selective Dorsal Rhizotomy

www.rhettjacobs@blogspot.com

Post Op. Day 2

Today was important. Donata, from Italy, is Rhett's PT. She came and Rhett instantly cried. He gets so worried when the medical staff enters the room. I'm sure he is wondering what else they can possibly do to him! But Donata was great. She even got him in a wheelchair! It was amazing. We enjoyed the excitement by walking down the hospital hall and coloring pages in the Young Zone (thanks Steve Young). I thought coloring might take Rhett's mind off of his legs. He would color for 2 seconds and say "It still hurts. Brown please." Then he'd color some more. "It still hurts. Green please." etc.

Luckily, the Doc. upped his dose of pain killer so he's resting well now. Of course he's resting now, because I took all the kids home with me. Hospital peace was once again restored after the family visit was over! He and Dad are watching Hairspray, his new fave musical and Alvin and the Chipmunks. With Dad in charge for a couple of days, they're probably going to party all night!

HAPPY BIRTHDAY RHETT!

Okay, also Happy Valentine's Day. It was a little rough, as birthdays go. I mean, there's the typical "eat so much you throw up", and party so hard, you break your legs.....

Actually, the Child Life Specialists made Rhett a big Birthday Poster and sang to him. His nurse, Kelly, who is awesome, gave him a gift (Candyland) and Dad, Paige and Meg came to visit. Everyone has been so nice. I hope they don't take Rhett's grumpiness personally. I tell them all that each scowl really means "Thanks so much. I love it!"

Operation Day

I can't believe my mom and Rhett were in surgery on the same day! My mom broke her leg and had surgery while Rhett was in having his legs broken. Weird.

Anyway, Rhett went in at 2:30 and the surgeons didn't come out until 8:30! It was a long day, but all went well. He lost a lot of blood so they gave him 2 liters and his levels look good now.

Last night he was pale and swollen because they did the procedure pronated, that is with him positioned face-down. So his eyes and lips looked strangely swollen.

At first we couldn't get his temperature up. They piled so many blankets on top of him, you could only see a little of his face! But as soon as he got warm, we took off most of the blankets and now he won't even let us put a gown on him. I guess he can wear his birthday suit when his birthday is Saturday!

This is myself, Rhett and Wes a few weeks ago at Pack Meeting. Rhett just earned his Arrow of Light Award! Yeah!

Okay, so everyone has probably noticed that Rhett did NOT have surgery last Wednesday. The surgeons had to change it to Friday--tomorrow!

I'll admit I am feeling nervous now. I know it's the right thing to do, but OUCH, it's going to be painful!

One good thing is that our dear friend, Kim Abbott, who is a nurse at PCMC, will be on shift Sunday. It will be good to see a friend there.

He goes under about 1:15 for a 5 hour surgery. I'll try to post afterwards, to let everyone know how he's doing. Thanks to everyone!

January 7, 2009

We are getting ready for the big day--February 11. Rhett will have both femurs broken and reset, both tibias broken and reset, both heel cords released and they will plate one of his knees. Basically, the plan is to straighten out all of his twisted leg bones and then retrain the muscles. Hopefully, he will bear with us and relearn walking once again.

He is oblivious to what lies in store for him in just a few weeks. We have been taking him everywhere (bowling, movies, restaurants, riding horses) because very soon he will not be able to move for a long time. Thanks to everyone for their support and for those who have chosen to fast and pray with us on Rhett's behalf on Feb. 1st. We couldn't do it without our wonderful family and friends! I just can't believe the body that Rhett accepted in order to come to our family and help us stay focused on what really matters. We are all full of gratitude that we have Rhett in our family.