Two weeks ago Joseph had a "limb clinic" appointment at Cincinnati Children's hospital. It wasn't the greatest trip. Joseph sobbed through his x-rays and I sobbed through his appointment. These appointments typically follow the same pattern. X-rays, wait a long time, sit in a room full of doctor's and listen to their opinions. These doctors are wonderful, very smart and kind, but I can't manage to hold it together while they talk about my sweet boy. I want them to fix him. I questioned them this time saying "you guys replace hearts here, why can't you fix Joseph's leg". Their reply was that hearts are easy while legs unfortunately are not. They strongly recommend not doing any surgery until Joseph is at least 7. They say that he will be older and will be able to understand more then. They strongly recommend against the surgeries that are performed in Baltimore, primarily because they will be psychologically damaging, there is no research to support the outcome and could do more harm than good to his joints. In fact, I think if the dr. down here had his way, we would never do surgery. I get the feeling that he thinks that prosthetic lifts/shoes are the best options for Joseph. I agree with what they say, mostly. But I know that prosthetics aren't meant to have a foot. I watch the way that Joseph walks, and I cringe thinking of all of the damage he is doing to his joints and all of the arthritis that is in his future.
We also just got back from a trip to Baltimore to see Dr. Standard at the International Center for Limb Lengethening. A completely different trip. Joseph loved his x-rays, waited patiently for a long time, and there were NO tears from either of us. Here is Joseph getting his x-rays:
Dr. Standard knows all about Joseph's leg...it's typically the only type of leg he sees. He commented that when he does get a child who has a fibula, it only gets in the way. Dr. Standard laid out a plan for Joseph that involved first reconstructing his ankle and hip followed by three lengthenings. Some of the lengthening will involve external fixators (google it if you are interested, I won't post a picture and ruin your next meal). Other lengthenings will use a mix of internal and external fixators. In a perfect scenario, it appears to be about 8 surgeries (including putting the apparatus in and out). Dr. Standard gives me so much hope, makes me want to jump right in and schedule the surgery. But after hearing the Dr. down here, it makes me pause...and we didn't schedule any surgeries.
The problem with this whole mess is each Dr. clearly believes his own philosophy. We have talked to countless parents. Parents who lengthen, parents who amputate, parents who do nothing. Every parent says they wouldn't do anything different, they made the best decision. Ughhh, gives me hope to know that we will be happy in the end. But, I also know that these are big decisions, and of course everyone is going to say their route was the best. When you commit to something like this, you have to be all in.
Our decision for right now is that we are going for a tie breaker. We are going to be seeing a different doctor at Children's, one who has been to Baltimore to tour Dr. Standard's facilities. So we'll see what he has to say.
I know that Joseph's problem is "just a leg" and it will be his cross to bear for the rest of his life. But I've been struggling lately, I probably worry about it too much. After our appointment at children's I was "down in the dumps", but I have been truly uplifted by the people in our lives. I think I cried as many tears of gratitude as I did for sorrow these past few weeks. The calls of support, gift cards for lunch on the road, gift cards to get candy for the kids, gifts of activities to keep the kids busy in the car, the support from our parents in every way possible....have overwhelmed me, have amazed me and remind me how blessed we are. So thank you, to all of you who have sent gifts, emails, calls and prayers. Thank you for reminding us that we are not alone in this, thank you for helping us carry our cross.
No comments:
Post a Comment