Yesterday we saw Grayson’s Mito doctor to discuss whether or not we should move forward with hip reconstruction surgery. I was fully expecting Dr. K to make the decision for us- to tell me definitively yes, he needs this, or no, it’s too risky. After waiting 2 hours past our appointment time before we saw her, I was exhausted, starving, and ready for answers.
Unfortunately, we aren’t off the decision-making hook. Dr. K said she was there to give us all the medical information she could talk us through the benefits and risks, but ultimately, the decision is Ryan’s and mine. No pressure or anything.
Except, yeah, unbelievable pressure. As I said before, both options have terrible aspects to them. There are many days where I don’t even feel like a grown-up, and yet am having to make crucial medical decisions for a child who has no voice. Decisions that will significantly impact his future and either way will cause him pain.
If we do the surgery, we are looking at a few really rough months. Dr. K described orthopedic surgery as “nasty” and said, “Think about how bad you think it’s going to be. It’s going to be worse than that.” But once we make it over the hump (she estimates full recovery/back to baseline in about 6 months) he should be ok and hopefully hip pain won’t be a concern. She talked to a palliative care doctor about Grayson and asked how they manage pain in kids with chronic hip pain. Narcotics. I made a face at that word and she said she agreed with me. We already have enough trouble getting G to “connect” with us, and we both fear narcotics would steal even more of his personality. And at this point, we have every reason to believe that Grayson has years to live, and we want him as fully present as possible for however long we have with him.
This morning, I called the surgeon’s office and let them know we want to schedule the surgery. We still aren’t 100% sure this is the right decision, but I don’t think we ever will know for sure until after we do it. And it may be that there isn’t a right or wrong decision- we just have to do what we think is best for Grayson based on the information we have now.
Thank you to everyone who has prayed for us, commented, and been so supportive the past few weeks as we’ve agonized over this. We appreciate you so, so much.