So after a long day the Lurie last Tuesday we left feeling confused and unsure of the plan and Cam was angry at the world! We first saw a new Orthopaedic Surgeon and really liked her. She completed a full exam on Cam, then brought her partner in to verify her findings and they both agreed that Cam would definitely benefit from surgery. Cam put on his headphones as she began to explain the process to us.
They would go in from behind his knee and release his hamstring as well as his knee capsule (this contains the tendons that seem to be a root source of his problem). He would stay in the hospital for just 1 night assuming they can get the pain under control and he doesn't have any complications. From here they would put him in straight leg casts that he would have to wear for approx 3 weeks. During this time he would be recovering at home and able to return to school using a wheelchair that was properly equipped to hold his legs up. After 3 weeks we would return to RIC (rehabilitation institute of Chicago) where they would remove the casts and begin 2 weeks of intensive inpatient therapy in order to help Cam regain his strength and ensure the tendons are properly stretched. Kevin and I were expecting this information and we felt good leaving the room. The doctor seemed confident based on Cam's other success from soft tissue surgeries that he would recover great and see good results. As far as the results go we could expect to see Cam use a stander and possibly stand on his own for a few minutes at a time. Walking seems to be a long shot, but I am not ruling it out! When he underwent his hip release in 2007 they told us he would never walk again and he walked for almost 5 years after that. I don't want to set myself up for disappointment, but if I was being honest there is a little piece of me that gets butterflies in my stomach when I think of him being able to take just 1 step. :)
From there we headed to the rehab doctor to discuss equipment.........As if my house wasn't full enough! She performed a rather quick exam and began talking about how she felt that if our only goal was to get him in a stander that we don't need surgery???!!!!! What???!!! We just left feeling confident about our plan and this lady just threw us all for a loop! My stomach began to churn, I was on the verge of tears and feeling overwhelmed once again. I took a deep breath, gathered my thoughts and began to try to listen to her with an open mind, even though I wanted to scream obscenities at her! She then begins to tell us that they may be able to make a stander work based on his level of contracture (inability to straighten his leg) but that we would need to go see the PT at RIC in order to determine if this was an option. All in all I am not sure that she was much help since by the time we left we were utterly confused and referred to a PT for everything we thought we were seeing her for.
In the following days we had a conversation or two with Cam and he just simply responds by crying and being mad. He is clearly upset at the idea of surgery, and who can blame him, and says he is perfectly happy using his wheelchair and does not want to walk or stand again. The doctors keep telling us that his drive to stand and walk again will play a huge part in his recovery and at this point we are unsure if he has that drive. We kind of tabled the conversations to let things settle in a little and meanwhile scheduled an appt at RIC for an evaluation to see what our options might be without surgery as well as scheduled the surgery for October 9th in the the event that the PT does not have a better solution. Cam does not know it is scheduled yet as we do not want to upset him any more until we know for sure we are going forward with it.
Now here comes the "feeling inspired" part.......
Today Cam and I were in the car headed to lunch and I told him he didn't have to go to school on Thursday and he responded with disappointment "another doctor appointment?" I went on to explain that we were seeing the PT to see if he could use a modified stander and use it without doing surgery and he seemed to perk up a bit. Then we were sitting at lunch and he brought up the subject again so I asked if he had given any more thought to our conversation the other night about wanting to stand and walk again and here was his response
"I did, I want to walk again. Even if it means surgery I think it would be worth it. I will be crabby when I have to wear the casts, but it will be worth it"
I wasn't sure what to say as I really wanted to break down in tears of joy as we sat at Target eating pizza. I actually had to say it back to him to clarify that I heard him right and he confirmed that he was ready to do it. ABSOLUTELY AMAZING!!!! I don't know how he does it, but somewhere in his mind he has once again forced the positive thoughts to the front and made a decision that I'm not sure most adults could make. He has accepted the pain and hard work as a pay off for ability to see the world from 51" tall and the potential to take a step, even if its just one. Still to this moment 4 hours later, I want to cry. I have tears in my eyes and my hands are shaking as I write this. I am so proud of him and hope that I can harness even 1 ounce of his strength through this process.
So barring any major changes to the plan we will be headed to Lurie for Surgery October 9th and be praying that the pain and hard work pays off for him.
Love this kid!