Legg-Calve Perthes Disease Pending Surgery

I've had a lot of questions about Littlest and his upcoming surgery. I've answered them as they have come but I've had a hard time getting ahead of the questions this time. Emotionally this has been the hardest of the three surgeries to prepare for and some days have just downright stunk. It finally feels like the time to write about it. Questions don't bother me so if I miss one of yours, feel free to ask.

Littlest was diagnosed two years ago with Legg-Calve Perthes Disease, or Perthes for short. It is a condition that interrupts blood flow to the ball of the femur causing in his case nearly complete loss of the femoral head. Though Perthes is not life threatening, it is life altering and very painful. His, as our new surgeon reminds me regularly, was very advanced at the time of diagnosis and he was over the age of six. Either of those factors make recovery more difficult and he had BOTH. 

In April we went for our regularly scheduled check up and x-ray and the doctor showed us how the bone has stopped growing properly. His femur sits inside the hip incorrectly and is causing him a lot of pain and limited range of motion. She recommended another surgery. We sent the x-rays and recommended treatment plan to our former surgeon, a Perthes specialist and an amazing man, who confirmed our new doctor's assessment and treatment plan.

This paragraph is for those of you who ask for details, if you're squeamish feel free to skip ahead to the next paragraph. In the surgery, the doctor will release the abductor tendons in his groin which will hopefully allow her to push his leg into the hip socket. If cutting those tendons do not give her the range of motion to get the femur back in the hip socket, she will also cut into the hip capsule. The goal is to maneuver his leg to the position it needs to stay in.

When the surgery is done he will be put in a petrie cast (both legs, thigh to ankle with a bar in between) for a minimum of six weeks. Depending on the range of motion the doctor can get he may be in the same cast the entire time or they may need to recast him widening the legs each time. Once he is out of the cast he will be in a leg brace for at least four months.

picture of petrie cast used from www.bcchildrens.ca

He will be allowed to be weight bearing which he wasn't after the first surgery. Although he will be able to stand and walk as needed, he will spend much of his time in a wheelchair again and will once again start school in a wheelchair. I love our new school, they are already preparing for his needs at the beginning of the school year. 

I've been asked several times what makes this surgery more difficult than the others. I think partly we have more time to think about it. At the original time of diagnosis, his disease was so far advanced that surgery was scheduled just over a week later. We didn't have time to prepare, we just had to act. It is amazing the strength one has in an emergency situation. The wear of doing life while waiting is much harder than relying on the adrenaline of the emergency.

The biggest reason this is harder though is we were supposed to be done with childhood surgeries. This summer was supposed to be the finish line. Last year his former surgeon told him he could play soccer this year and rather than playing sports and running around, he's in constant pain and facing another surgery. The active stage of Perthes is 2-4 years, this is the two year mark and it feels defeating to still be in this much pain.

For the logistics, surgery is July 28. We are working on getting our house prepared. The younger boys currently share a room and we are moving Middlest to his own room. It is good, it will give them both the space they need, AND it is a ton of work! In the next two weeks we will have a wheelchair ramp built, something we should have done the first time around and now we know. Grandma is helping sew "breakaway" clothes to fit over the cast. He obviously cannot go commando for six weeks! 

I'll update more later. I'll tell you more about how we are all feeling but for now I just wanted to answer all the questions that have been floating around. Love to each of you. We appreciate all the prayers and well wishes that have been sent our way.