Last night I was working on a fabulous post and movie about Brandon and how proud I am of him and his work. But I will have to save that for another night. Today I am back in shock, like I have been so many times in the last 21 years. A new diagnosis, a new procedure, a new direction, all start with shock, depression, learning about what it means, acceptance and moving forward. I hate the shock part. And I really hate it when I am not prepared to be shocked.
Today I took Brandon to his new adult scoliosis specialist here in Austin. He came highly recommended from many sources. So I was feeling confident about our appointment today. Just a check on Brandon's scoliosis. In fact I was feeling a little guilty for going in at all and wasting everyone's time. In 2011, Brandon had his last check at Scottish Rite and the curvature was at 44%. Below the dreaded 50% which is when the doctors start talking surgery. At Scottish Rite we decided that Brandon was fine without surgery, he was doing well and he was past his growth period. He has not gown an inch since 2011. We all felt confident that Brandon would stay at 44%. Again 44% is not perfect, but it is manageable.
Brandon had an x-ray at the office and we pulled it up in the exam room. Brandon has gone from 44% to 52% since 2011 and he has not grown an inch and has the same weight. This really puzzled me. Apparently there have been new studies that indicate Brandon's type of scoliosis can continue to progress, The options for treatment is to do nothing, but risk extreme pain for Brandon in the future and possible progression of the curvature leading to a very extensive, complicated and painful surgery in the future. The alternative is do move forward with the surgery to correct soon which has a high rate of success, less extensive and will repair Brandon's spine. It's a crap shoot. One that I don't take lightly.
Brandon would be in the hospital 5 to 7 days (that means 7) and could not go to school or work for 6-8 weeks. Brandon is headed into his last year of school in the adult transition program and this would be a major consideration of when to have the surgery if we decide to go this direction. We are planning on going to England next summer so I would want Brandon to be completely healed prior to us leaving.
Brandon immediately said he wanted to have the surgery. But I reminded him of the pain from the past foot surgery and related that pain to what this surgery would be like. He brushed off the topic and started talking about the Beach Boys. I wish I could do that.
This also is not great timing for Brandon related to work. We are making such great progress on Brandon learning how to work independently at a job and I think we are ready to start looking for competitive employment. We don't want to lose the progress we have made for the last 3 years.
So I have decided we need to get a second opinion (now I am in research mode), reach out to Scottish Rite for their advise and the great "mom network" for their wisdom. I am trying to move past the shock and get all the information I need to help Brandon and I make a decision. But geez, I am feeling a little sorry for Brandon. There is not good answer.
More later
Leah
2 comments:
Hugs! I completely understand.
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