Orthopedic Surgery- Again

After our initial visit with Dr. Emily, I became the best researcher in the entire world. I can almost guarantee you that any mother with a child that just got a surgery name, a lab test, a diagnosis etc, does better research than the FBI! You can't underestimate what things we WILL find. And sometimes it takes us to another planet to do it, but we want all the information we can.

So I started with Tendon and Cord Releases. Tyler is MUCH older than 2. But he also is a lot more mobile than most kids with CP. Next, I went to therapists that we had. Tyler's PT, Sam, also had a patient that was looking at needing some orthopedics surgeries done as well.  So we exchanged information.

A surgery that is not new but is new in the CP circle is a surgery know as SPML or Selective Percutaneous Myofascial Lengthening. The surgery seemed like it could just be an answer to a prayer.  However, only 2 doctors in the entire United States do it. One doctor founded the surgery, the other was trained by the founder. I read all I could. And made a list of questions to ask Dr. Emily when we went back to see her when she got our Gait lab studies back.  I joined a group of people who had the surgery done and needed to see what the responses were.

I researched PERCS or tendon lengthening procedures and SDR , or Selective Dorsal Rhizotomy. Both of these are still surgeries in which he may have to have in the future but it will all depend on how well he does and how well his body responds.

The final option that I researched was called a Single Event Multi-level Surgery- or SEMLS. This one is a little more invasive and I really liked what the SPML offered by way of cuts and quickness in getting the kids back on their feet. I also talked to another mother about the surgery who had done it on their daughter. It was only one leg and she gave me so many things to be hopeful about. My issue of the full care and no mobility was really bothering me. She helped eased my concerns until we found out he would NOT be able to move like she had. IT was VERY hard, but she was so kind in answering so many questions. But, we couldn't know anything about our options until our update and report for the gait lab.

The report came in and our appointment was made. Tyler was quickly going down hill as far as his foot was concerned. He had to have his muscle relaxers upped and he was falling asleep in school for several hours. He was crabby at home. It was just bad. And to top it off, we were still without even a temporary brace.  And we were without a plan!

Dallas took the time off work to go to the appointment because he had a lot of questions as well. This surgery is literally HUGE! No matter what, we have to do something, but it isn't going to be the easiest thing. It also takes away so much for Tyler and adds on an extra load for me as the mom and as a family as well. Every single person in the family will be impacted by doing a surgery on Tyler.

At the Hospital we were checked in, weighed and I was nervous. So nervous that I was so glad Dallas was there because I was not able to be where I needed to be. This is also where we learned that Tyler has FINALLY gained 1.5 pounds. That is the first legit weight GAIN in 3 years. We were loaded into our room and then we were taken for X-rays. Grayson and I sat in thew waiting room looking at X-rays on google images ( we were selective but dang.... those are funny!) Tyler had a TON of X-rays and Big Bird did and Tyler got Grayson a sticker or 2.

The appointment went well. I ended up in tears multiple times. His study was done and his lab was looked at. His hips are fine ( THANK GOODNESS), he doesn't have Scoliosis ( thank goodness), and he is still small and has not hit puberty yet (Hooray!). The bad news: when combined with his gait results and his X-rays the option for surgery was pretty much taken off the table. Before it felt as though there was an option of yes or no. Now there was a much heavier air of " We need surgery and NOW. Now to figure out the best one.

I asked about the SPML and we weren't even able to qualify for it, and I kind of felt laughed at for asking.  The best bet for Tyler would be the SEPML or the Multi level surgery. With the gait lab and X-rays and how his legs work and how things look when that body fires, it fires in all the wrong place  and at the wrong time and it just makes for a terrible looking walk in all the wrong places. It also makes it look really VERY painful.

At the time of the appointment Tyler and his feet were so bad that he was literally walking on the top part of his foot. it was REALLY bad. He also NEVER complains of pain, and he complained everyday. I thought for sure that we would still be sent for braces but we weren't.

We got all the questions answered we could think of. The ins and outs of the surgery are this: Tyler will have whatever tendons and cords released that they think he needs when they get into his legs. His femur will be rotated on his right leg. They will put a plate in it. His feet with have some reconstruction done on it, but to what extent we just don't know until they get in there.

Recovery time: 6-8 weeks non weight bearing. Casts. Wheelchair. He cannot, CANNOT put any weight on his legs. So we will be adding a few new workers to our house. ( If you live in Arizona and need a job!!!! Holler) Tyler will be in the hospital for 3-5 days. After the 6-8 weeks, he will have therapy 3 times a week for the next several months after that.

Summer time this year is only 6 weeks. Tyler's surgery is going to be on his last day of 3rd grade. Hoping to get this all done for the summer makes it so that we will have a loner surgery time. Total Surgery time will be 6-9 hours. It will be over a holiday weekend.

That was a lot of information!!! And dang... Surgery stinks!!!