Saturday, July 2, 2011

Sighing...But Still Smiling!!

Sam decided to walk into his appointment on Friday and even the ladies at the desk noted how much better he was doing than when he first came in on a stretcher in his body brace with the ambulance crew.

He got through his two x-rays and then we went to the examination room. The x-rays were up on the screen and I sighed as I realized that there was no white fluffy stuff to be seen. I watched Dr. Thometz walk in with anticipation and then see it drain as he reviewed the x-rays. He turned to me and said "Unfortunately Sam has not made any progress toward healing or bone regrowth to allow him to have a functional hip." "The surgery was successful to put the bones in the right position but Sam's body hasn't taken on the challenge to heal and regrow the bone."

There must have been a lot of prayers said because I remained calm, composed, a sense of comfort I can't really explain and I began to ask all the questions. Sam remained happy and comfortable watching his Wild Hogs movie on the Ipad.

I asked if there was still a chance that Sam's body would begin the regrowth process? Dr. Thometz is remaining optimistic but was honest in his response that he would have hoped to see that process already beginning or manifesting at this point in his recovery. He again explained to me that Perthes is different in every child and Sam is at an advanced stage and at an advanced age.

But this is Sam we're talking about. This is the same child that we were told may never talk and would probably have difficulty learning to walk and would have the mental capability of a 2-3 year old. Sam stormed through that bleak diagnosis by the time he was 3 and continues to show us that his potential is unlimited.

And then of course there is the support network that surrounds Sam and our family who have prayed us through the worst of times. And most of all there is God and no one can ever determine what His destiny is for Sam. So I ask that we once again storm the gates, remember Sam in your prayers and ask that his hip heal and that the bone regrows. Sam needs a functional hip!

I asked about the hardware removal surgery that was scheduled for December. Dr. Thometz will be putting off that surgery indefinitely until Sam's body shows that he is ready to have the hardware removed. Sam has had a slow and sometimes rocky rehab, and he would like to give him more time. Part of my brain can see the rationale and part of my brain wonders how Sam will tolerate finally getting strong and mobile and then having the surgery and needing to repeat the rehab process and therapy all over again.

But this is Sam...the boy who worked hard to learn to crawl and walk after his brain injury. And even after this surgery has learned to swim independently and can ride his bike again. I am reminded of my last post on resilience and I still can't argue with what Sam is teaching me.

I asked what happens if we don't see regrowth? Dr. Thometz again said that we are not looking for a perfectly formed white ball just a flatter, smoother top to allow Sam's hip to function. He explained to me that he has many patients that have a hip that looks bad on x-ray but are still mobile and functioning. Many of them can get 10 to 15 years on a hip that on x-ray looks like it shouldn't function. Everything is dependent on Sam and if he is able to function and have mobility with the hip he has. As an adult he would be a candidate for a hip replacement. Again my mind wondered how much pain Sam is in and will continue to be in.

I asked if it would be helpful to restrict Sam's motion and activities? Dr. Thometz referred to patients in Europe that were put on strict bed rest, even hospitalized for 2 years but those actions didn't really produce the desired results. In Sam's case mobility, movement is crucial to help combat his low tone and keep his weight in line. I will continue to let Sam decide what Sam can do and when he needs to rest or lay down, he can do that. It's kind of ironic...Sam doesn't seem to know he has a non-functioning hip because he continues to do what he wants to do and never really complains much about pain. He has pushed himself further by learning to swim on his own, biking again and we hope to work with him on the monkey bars for upper body strengthening. Although his body structure is weaker he seems to be getting stronger.

I asked if there was anything else we could do surgically? Dr. Thometz and I agree that there are other procedures but none of them come with a guarantee that Sam will end up with a functional hip and less pain than he is already in. I need to research, think and pray more about this area. In Sam's world a surgery impacts so many other areas than just the surgical site, especially respiratory and immune issues.

And yet as we walked out, Sam smiled and said "Thank you" to his Dr. He waited patiently as I made the next appointment for October and he turned to me and said "We did it Mom, go home."

I looked at Sam and smiled, this boy is beyond resilient he is just simply AMAZING! Sam will be jet skiing, swimming and playing with his cousins this weekedn. He and I will turn over the worry to God and just simply enjoy being together and being with family. I ask for each of you to remember Sam in your prayers and I wish each of you a wonderful 4th of July weekend. Sam and I begin his new NACD program on Tuesday and we begin preparing for our road trip in August. I don't know where this journey with Perthes is leading us but I do know that I will continue to encourage Sam, love Sam and let Sam enjoy his life to the fullest.

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