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.





Tuesday, November 15, 2016

Selective percutaneous myo....what!?

A few months ago I expressed my frustration over Caleb's leg contractures. We have been fighting a never-ending, never-gonna-win, battle with his leg/feet tightness. It has gotten progressively worse over the last year and has begun to affect his ability to do things. He can't get his pants on without help because the tightness in his feet cause them to get stuck in the pant legs. He has trouble getting in and out of his wheelchair because his legs are so stinking tight. The contratures are hindering his ability to move forward with physical therapy. In some ways he is the strongest he has ever been but the leg tightness is holding him back.

So why is he progressively getting tighter? Well I think it is a result of several things. First, his tethered cord release in 2012 robbed him of his ability to walk. He had to start from square one. Because he could no longer walk, he didn't get as many opportunities to get those legs straight. We fought the tightness for a long time with stretching and bracing until the inevitable happened...he grew, and grew. Growth is by far the biggest cause of these contractures. He has shot up like a weed in the last year and is growing by the second. Trying to grow with tight hamstrings just makes the tendons tighter which makes the muscles shorter and less likely to straighten. That's where we are now.

After exhausting all options to get those legs straight, we realized that surgery was the only way. After talking with his physical therapist and doing some research we learned about a less traditional approach to contractures. It's called Selective Percutaneous Myofascial Lengthening (SPML for short, or Percs Procedure).

What is the SPML?



There are only a couple of doctors in the country that do this procedure. Luckily one of them happens to be in Texas. We met Dr. Yngve for a consult over the summer and Caleb is a candidate for this procedure.

Still confused? Here is a good illustration. Picture the contracture as a rope, pulled as tight as it can go.

The SPML procedure uses tiny incisions to "fray the rope" without cutting through it (like most traditional tendon release surgeries). There are no stitches, almost no blood loss, and far less scar tissue this way.

Fraying the rope allows the muscles to lengthen and stretch.

Caleb is having the SPML procedure on both legs, specifically the hamstrings as well as the groin/hip area. Caleb does have some significant tightness around the knee so Dr. Yngve will also be doing capsulotomies of the knees. This will actually require an incision into the knee.

This part freaks me out, I'm not going to lie. But I get that it is necessary in order to get the most flexion and movement out of legs. This isn't an uncommon procedure but it does add an element of concern.

Typically the SPML procedure is outpatient but because of the extra knee work, Caleb will stay one night in the hospital.

The plan (as of right now) is to do serial casting for a few weeks after the procedure. We will have to travel once a week so that Dr. Yngve can recast. Each casting will force the leg to straighten even further than the week before.

Caleb has the surgery next Wednesday (yes, the day before Thanksgiving). Here's what you can pray for:

First, that the surgery goes well and that Caleb does fantastic. No complication, no issues, no problems ya'll.

My biggest fear is pressure sores from the serial casting. Caleb can't feel his legs very well and casting a leg you can't feel can easily lead to wounds. Dr. Yngve has a lot of experience casting kids like Caleb and he is confident things will go smoothly.  That is largely the reason we are traveling weekly for the doctor to do the casting himself. So please pray for no pressure sores as a result of casting.

Pray for Caleb's anxiety. Obviously he isn't excited about having surgery but even he realizes that we have to do this. He knows things aren't right and he is frustrated as well. Pray that his spirits stay up especially during the weeks of casting when his ability to get around will be hindered a good bit.

It's hard as a parent when you have to make decisions like this. I hate that we have to put him through this but I know there is no other way. This isn't going to get better on his own so we have to intervene. I know this is the best route for him.

We meet with Dr. Yngve the day before the surgery to go over everything fully and I'll update on the blog as things play out.



Resources:

What is SPML anyway? (a good article written by a mom)

SPML group on Facebook

FAQ's about SPML

Thursday, November 10, 2016

5th Annual Spina Bifida Christmas Card Exchange



It's that time of year again folks! It is time to sign up for the 5th Annual Spina Bifida Christmas Card Exchange. If you aren't familiar, here is how it works: Sign up by sending an email to the address above (name, address, and child-if child has SB). I will be taking signups until November 25th. I split the list of participants into groups of about 10-15 families. You will be assigned a list of families to send a card to. I try to keep the list size small so it is manageable but you are free to send out as many cards as you want. 

It is really fun. I love going to the mailbox and finding several cards each day from fellow SB families, children, and adults. 

Sign up!

Tuesday, November 01, 2016

Minecraft Halloween

Minecraft is incredibly popular in this house so our theme for Halloween was a no-brainer.


Our Minecraft Jack-o-lanterns.

Benjamin is a Skeleton and Caleb is a Zombie riding a spider....if you know Minecraft then you understand. Benjamin had the idea to decorate our trunk to look like the inside of a Minecraft house so I went with that. It came out great and we actually won "best trunk" at the trunk-or-treat.

Benjamin loved his costume. I've never seen that kid so excited. 

All 8 legs made it through the night which was nothing short of a miracle. Watching Caleb navigate this spider was hysterical. He kept bumping into things and hitting people with his spider abdomen!

A close-up of the trunk. I just painted some cardboard brown to look like walls. I printed out the TNT sign, bookcase, and the Minecraft wall art. I made the chest out of a shoe box and found the torch printables online, I added lights to make them really glow. Our Minecraft trunk was a huge hit. Everyone, kids and adults, commented on it. 

Poor kid couldn't see a thing but he had a blast anyway. You can actually find these Minecraft heads online. I just printed out all the sides, made a box out of cardboard, glued the head pieces on, and done! For the bones, I just used chrome duct tape on a black turtleneck and black pants. Of course it was in the upper 80's here in Texas so my boy was hot. Oh well.

The spider face. I added red lights for the eyes which looked really cool once the sun went down.

Torches blazing.

It was a great night, the boys looked great and the trunk was a winner. It was fun but I'm so glad October is over. I made 26 wheelchair costume kits from my Etsy shop so by the time I got around to making costumes for the boys, I was DONE. I barely had anything left in me these last few days, but it got done. Whew, I'm glad it's over. 

Yesterday may have been Halloween, but more importantly, it was Hallow's 3rd birthday. 

She's so pretty. I love her.


Links:
Minecraft Skeleton Head
Minecraft Zombie Head
Minecraft Torches


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