Tuesday, November 29, 2016

SPML and Knee Capsulotomy

If you read my last post, you know that we decided to do the Selective Percutaneous Myofacial Lengthening (a.k.a. SPML, Perc procedure)for Caleb's leg contractures. Last week we traveled to Galveston for the surgery. We went the day before to meet with Dr. Yngve one last time before the procedure. After our pre-op we tried to squeeze in a little fun by walking the pier.

I'm so thankful Caleb can be silly even when he is about to have a big surgery. I was barely holding it together but he was a trooper as always. It's so hard when you have to make these decisions for your kid. We knew it was the only option but that didn't make it any easier. 

Caleb was the first surgery of the day.

Sweet boy. I know he was nervous and rightly so. He did so amazing though....even before they gave him the Versed to relax him. 

The surgery took about 5 hours.

The surgery went fine. Caleb did great.

Because of the knee capsulotomies, Caleb had to stay one night in the hospital. They wanted to make sure his little toes were getting plenty of blood flow. 

We were released on Thanksgiving day and headed back to the hotel to rest until the following day.

The first set of casts were soft, basically just a lot of padding with layers of ace wrap. He had to keep his legs elevated as much as possible the first few days so there was a lot of lying around. 

I'm not going to lie, the first couple of days were rough. Luckily he didn't have any pain (a bonus of not being able to feel your legs) but he struggled emotionally. There were some tears. His and mine. The reality of having both legs in casts hit him hard....hit me hard too. When your kid asks, "Why do I have to go through stuff like this?" while tears run down his face you just hug him tight and let your tears flow right along with his. A solid night of sleep did wonders for his mood and he has been doing much better since we got home.

This kid. We ask so much of him sometimes. Trips like this aren't fun for him. He did great though even during the long day at the hospital while Caleb was in surgery. I did what I could to make things as enjoyable as possible, including taking him to Walmart on Thanksgiving day to pick out a small Lego kit and buy ingredients for banana splits.

We made the drive home two days after surgery. It was good to be home.

Having a visit from his buddy Bryce did a lot to lift his spirits.


We figured out a way to rig up his wheelchair so he can get a bit of independence back. We used 3 layers of cardboard because I'm the queen of cardboard and it was readily available. The cardboard actually slides under his seat cushion so that the weight of his body will keep the leg rest in place. We didn't actually have to attach it to his chair. I bought some thin padding and fabric (he wanted Dallas Cowboys fabric) at Walmart to cover the cardboard. It works perfectly and allows him to get around a bit. I did put his wheelie bar back on because having his legs up changes his center of gravity and he could tip back.

Caleb wore the soft casts for the first week. Today Glenn and Caleb made the trip to Galveston for his first set of hard casts. He will go to Galveston every Tuesday for the next several weeks for a new set of casts. Each set of casts stretches the legs a little bit more than the week before. 

Okay, ready for the nitty-gritty incision stuff? I know you are.

This is his hip. Yngve did the SPML procedure on the hips and hamstrings. I couldn't get photos of the hamstrings because of the casts. You can see that the incisions are barely incisions at all. They are TINY! No stitches, no blood loss.

Now the knee capsulotomy is a whole different ballgame. Glenn got these photos today at the cast change.

He has incisions on both sides of each knee. You can see one red spot above the incision, this is a small sore from the casting. I don't like it but the doc wasn't concerned. Pray for it to heal quickly. Pressure sores are my biggest fear and with serial casting they can be an issue. Luckily the weekly cast changes will allow us to see how his skin is doing each week.

Yikes ya'll. 

Here he is today in his new hard casts. They glow in the dark!

His legs are so much straighter already! I can't believe how much taller he looks. I couldn't believe how long he was when I tucked him into bed tonight. He noticed it too and said we would need to get him a new bed because he's too tall now! They should get a bit straighter each week. They wrapped his feet this time too because he tends to have a lot of flexion in his feet so they are trying to stretch them as well.

Continued prayers that we can get those legs as straight as possible. Pray that we keep pressure sores at bay and his skin stays nice and healthy. And pray that we can learn to manage life and find a routine. Day to day stuff is proving difficult with his legs in casts and he is much to heavy to just pick up. 

I will continue to share our experience and his progress. Feel free to ask questions and I'll do my best to answer them as the weeks go on.





2 comments:

Jen said...

so amazing how this all works. but I can't imagine both legs in full casts. way too heavy to lift for sure. been thinking of you. glad to hear things are progressing nicely. definitely will be praying about those pressure sores. the worst! miss you guys. also, when did your boys start looking so grown up?! time is flying.

Nicole G said...

Praying for continued healing and no pressure sores! It's so terribly hard as a parent to watch your child go through difficulties like this, but somehow they always seem to get back to themselves soon enough.

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