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!!!

Medicaid D

When we went to PCMC back in October for a follow up for Tyler's CP and last phenol injections, the Nurse Practitioner sent us down to the medicaid D office on the bottom floor. As we were going through possible future treatments she mentioned that it was unethical for her to ask us to have to pay 20 percent of the cost. His long term care would be to costly and it would make a family homeless. Without the treatment it wouldn't "kill" him so it isn't technically withholding treatment. It would just make his life a little easier. She said that we really needed to get secondary coverage so we could afford all the things that he is going to need.

Of course you leave a little frustrated knowing that you will never be able to take care of your child and frustrated that the system works the way it does. If he was more severe or had a trach there is a waiver. If we were poor there would be no issue. But the fact that we are middle of the road, middle class people we get to chose between a place to live and things that will make his life better.

After the appointment we went right down to the Medicaid D office. It was almost closing time but we decided to sit there and fill out the stack of paper work to start off the application instead of having to turn it in to another office and forget to do something. So I sat there with Tyler and filled it out. After we were done it was taken right down to the neurosurgeons office to have his nurse fill out papers. By the time we got back home his nurse had called. She filled out what she could and decided that she wanted Dr. Gooch to fill it out. So she nicely took up it there and that was all we had heard.

Thanksgiving came and the high and rush of the new baby and then Christmas. Soon after the new year as we were working on the stroller thing and I kept calling the social worker. He would never return my calls so I was annoying and called every day at 2 and left a message. For ONE full week. Then I called our nurse coordinator at our peds office. I NEVER have used a coordinator. I have always done it myself. Clint, the nurse coordinator, laughed and said our doc said the same thing. She will never call you. She does it herself. BUT I broke down and got some help. He called a few times and finally I got some random person who said someone would call me back in 3 weeks. I was like um NO.

After a few 3 hour phone calls our dude called us back from PCMC. He said that they had been sending it to a random Nancy Brown somewhere in Lehi. We got them looking at our application and the address they have is our current address but they were sending it someplace else. Once we got that fixed we got some extra paper work in the mail.

Last night as we were going through insurance coverage and deciding how much we could afford on the extra stuff for flex spending and what not we filled out the PILES of paper work. They don't cater the forms to kids so you spend an hour filling out stuff that is Not applicable. Then they ask you to compare your kid to other normal kids and tell them what is not "normal" for your kid. I was like "Um really." Your asking for all our health records to send it to a board of people to determine if he has a need for disability and you want me to remind myself that we suck.

Sweet... Lets do that.

So 2 pages later as to what we suck at and I am about done mentally. Emotionally I was done from the day before. Tears start flowing. Then MORE tears because I realize as we get older and older, that me as the mom are making the adjustments of stuff we didn't want to be doing at 5 and other people are telling us he isn't welcome because of those things.

Today, I have lots of appreciation for the kid that I do have and a realization that his life and his well being are a balance and that if others who should love him can't made the adaptation then I will do them for him and do them alone. If we can't get the disability then we go homeless or sell a car. We make his life easy for him. We didn't want to be changing diapers at 5 and we didn't want to be ordering strollers or wheelchairs and braces and being told we can't do something that will make his life easier.

So 30 more days and we MIGHT find out that our spend down a month is outrageous because again.. those darn middle class folks just are rolling in the secret Dough and we start over in our quest.

If you have applied for Medicaid D what advice do you have? Was your spend down NUTS? Are we barking up the wrong tree?