Thursday, November 16, 2017

Today I hate CP!

I don't always hate CP. I have come to terms with it. I have learned to accept it. I have learned to live with it. Nearly 15 years has passed since CP became part of my life. But today, today I hate CP!

I hate that CP destroys the body. I hate that CP causes so many tears. I hate that CP will make me worry until I die. I hate the decisions that CP causes me to make. I hate that CP creates a difficult life for my son.

Brendan has been through 11 surgeries in his (almost) 15 years of life. #12 seems to be on the horizon. Brendan had a right hip osteotomy at age 5. To this date it was the most difficult surgery. It was worse than SDR. The surgery itself and recovery was brutal. He has never walked the same. He was running the halls at age 5 prior to getting checked in for surgery that day and did not act like his hip was 100% out of place. His left hip has been taunting us since he was 8. It was taking a beating according to Dr. Nuzzo. I found out that it was 40% out of place during his SDR evaluation at age 11. I had been avoiding the orthopedics for a few years so I had no idea. I lived in bliss for a few years! After SDR it was only out 25% and I was ecstatic but that didn't last long. Last year it was back to 40%. He had x rays today but I wasn't told the percentage. I am waiting on Dr. Yngve's opinion which is the only thing keeping me sane right now but definitely not preventing the tears and impending depression.

The magic number is 50%. Why is this number so important? #1 Dr. Park told me if his hip goes out to 50% he needs surgery asap. #2 If we decide to travel for yet another surgery there is a possibility that he can have a less invasive hip surgery called SLOB. They basically build a shelf above the hip bone to prevent it from sliding out further. The femur is NOT cut and repositioned. This can not be done if the hips goes over 50%. I am not exactly sure why that is.

I have spoken to 4 doctors now about his hip. 3 out of the 4 want to perform surgery either now or in the very near future. A few were a little too surgery happy for my liking. I have also been told he will never get back to where he is today so all this work, all of these surgeries were for nothing?! I immediately contacted Dr. Yngve after crying all the way home. I have also been told that he will have a major set back but he will get back to where he is today if not better. I do not know who to believe. Do they even know what they are talking about? Do they even know the answer themselves? Do they estimate based on all the previous children with CP that they have performed hip surgery on? I don't know. Why is there no other option except for surgery?

I tried to ask to the tough questions today and I went in open minded. It was the first time I didn't fall apart talking to his doctor about his hip. As soon as a doctor mentions his surgery I lose it, I ugly cry. I get angry and just want to leave. Somehow today I stayed strong. I didn't even come close to shedding a tear. Maybe it was the doctor. Maybe sometimes I am stronger than I even know. Today I asked if there was any way to avoid cutting the femur. The doctor did not give me a direct no. He actually is setting Brendan up with a CT scan so we check out all of the anatomy and see if it is possible. I was fond of that answer. I 100% do not want to cut his femur. This is his good side. His good leg. I do not want to destroy it.

Unfortunately there is no cut and dry answer here. I have multiple opinions and ultimately it is my decision. A decision I do not want to be responsible for. I talked in depth with his doctor today. Apparently if you do not fall apart you can actually discuss a lot of things regarding said surgery! Who knew?! I was told that we could wait because he does not complain of any pain, but if we do wait we will deal with adult cartilage and adult bone which will be a much more invasive surgery and be more difficult. However, what if we wait and it never moves out further than the 40%? What if he never actually needs surgery?

Maybe most of you are thinking just do it now. Get it over with and never worry about it again. His right hip looks amazing even after 10 years. I am fairly certain everyone that has been through this surgery or watched their child go through this surgery will not say that. Remember he has had 11 surgeries and hip surgery was the absolute WORST.

So today I get to cry. I am allowed to be angry and I get to hate CP. Tomorrow I will carry on as I have been doing for almost 15 years.


2 comments:

Sheila said...

I'm so sorry you are faced with another terribly difficult decision. You have every right to be upset and angry. But you're right, you will carry on and make the right choice for Brendan and you will be as strong as you always have been. Hang in there! I hate CP too!

We take it day by day said...

Thank you Sheila. Sometimes it isn't fair. Plain and simple. I never wanted this for him. Fortunately he has happy as can be. Not a worry in the world.