What exactly is an osteotomy anyway?

So, now that I've had my much anticipated hip surgery, Mom says we can actually talk about what they did. She said she couldn't talk about it before or look at pictures because it was, "too much." Luckily, Dad was able to read the 25 page booklet the hospital gave us called, A Guidebook for Hip Surgery in Children with Cerebral Palsy. These are the things I had done on Tuesday during my 8.5 hour surgery:

This is what my hips will kind of look like on an xray.

- Femoral Osteotomy- my femur bone was not sitting in the hip correctly so it needed to be positioned correctly in the socket and then attached with screws and a plate. Eventually they will probably take out the hardware in maybe 6 mo-1yr.
- Pelvic Osteotomy- this part of the surgery helps make a better cup in the pelvis to hold the ball of the femur.
- Tendon lengthening (achilles, foot, adductors)- the lengthening will help so my muscles won't be so tight trying to hold my hip in the wrong place. I also had a lengthening of muscles on my right heel and outside of my right foot.
- Foot reconstruction (right foot)- Over time my foot has become a little deformed because of the tight muscles and high tone I have all over my body. I am super strong, have you read about Tonus (my alter ego)? Needless to say, the pump that keeps Tonus at bay was not a silver bullet and Tonus is still alive and well, but a little more subdued. Anyhow, back to my foot- it had a huge protrusion on the inside of the foot from over pronation, so they needed to put some screws in to keep it from getting worse. 

I am hanging out at Boston Children's Hospital recovering from my surgery on the 10th floor. We have a pretty cool view of the other buildings close by, but we have to share a room. Luckily, our great nurse and Dad worked for us to get the window spot after our first night in the spot by the door (loud, bright, and annoying). 

 

This is what my legs look like

I have to have this wedge between them for 6 weeks. I also have soft braces on my legs to keep them straight and a cast on my right foot to keep the tendons from tightening up.









 

I also have lots of medication because they did lots of work on my joints. I have an epidural in to take care of some of the pain and lots of other things that make me pretty sleepy. The first night was pretty awful, Mom and I didn't sleep at all. The second night was better. Here is what my medication pump set up looks like- lots of hoses and stuff.

At BCH they have some cool programs, like Reiki treatments. I was really surprised when my own doctor came to my room to do the treatment today! This is Dr. Davidson, she's pretty awesome. She teaches yoga at the family center also.  They also have therapy dogs which I am hoping will come to say hello one of day.

There is a fun room on my floor to make crafts and see the other kids, but I haven't been out of my room yet. Hopefully I can get there by the end of the week. If it wasn't so cold we could go outside on the roof to the garden- it's pretty cool.

Tomorrow Dad, Addy and Liam will come to see me. Hopefully I'll be more awake and in less pain by then!

Mom Hijack: Zen Parable in Real Life

A little over a year ago some of you may have read this "rant." If you didn't read it, in a nutshell, MassHealth denied a claim for a piece of equipment for Kai and in order to appeal I had to be at a hearing on a day I could not attend. There is no way to reschedule these hearings. I didn't post an update about the series events that occurred after that rant, and felt that it deserved some time and attention, since the eventual outcome was what we wanted.

After writing the "rant" I decided to let the appeal go. I was going to find another way to pay for Kai's gait trainer. But then an unexpected gift came along in the form of a winter snow storm on the day of the appeal. I got an automated call that morning stating that all hearings were cancelled because of the weather and I would be notified of a new hearing date. Wow. How. Lucky. 

When the new date came I made time in my schedule to attend the hearing and spent a lot of time preparing for the meeting. I went through their denial and qualifications for approval of the gait trainer. I went into the meeting with a framed picture of Kai which I put on the desk next to me (a little dramatic, but I was pulling out all I could), as well as a number of video clips and photos of Kai in his old gait trainer. I was fortunate enough to get some great advice from my personal sage about going into the meeting with a different paradigm than I had been living with. I was sure they were going to say no, deny it again and that anyone who had this job was awful and miserable. Just a few words about the martyr vs trickster paradigm and my viewpoint turned upside down. I went into the appeal with a completely different attitude. Now I was thinking, "How do I give them what they want so I get what I want?" In the end, the deciding piece of information was a 15 second video clip of Kai using the gait trainer without support from someone else. They saw what they needed and reversed the denial immediately. This situation reminds me of the old Chinese parable about good coming from something you initially think is going to turn out bad. 

In the case of our other request to MassHealth for a communication device- it was denied for a third time. We decided not to appeal because I did not think I could give them what they needed to change their minds. We are working through this communication piece and hope next school year will be more fruitful in this area.

The reason I chose to follow up on this situation now is because Kai is getting ready to have major surgery in two short days. The gait trainer has been important in preparing him to enter the surgery strong. He has been using it almost every day with varied success, but just last Friday he walked over 100 steps in one trial, which is more then he has ever walked! You can see a video of the last few steps here.

This Tuesday Kai will be in surgery for 10-11 hours having a femoral osteotomy.  Kai's hips are at risk of dislocating and this surgery will prevent that from happening and also create more stable joints for him. He is also having a procedure on his right foot to keep it from pronating and leading to deformation. He will be in the hospital for 5-7 days and home for about 6 weeks. If anyone wants to send him video or voice messages, he would LOVE to hear from you!

Kai's been trying to get in as much fun as possible before his surgery. Some highlights...

Cousin Sleepover at Mema's

CC Museum of Natural History

Bowling with Liam

Virtual Reality- Whoa!

Sledding with Cousin Emmett

I'm on Dad's team!