Sunday, May 14, 2017

here we go again...

Many times I thought I would write some how to advice of how we managed having Littlest in a Petrie cast last year. I thought I would post pictures of how we modified clothes and how he managed to get in and out of the car with both legs cast. And then I thought I'd post updates like when he got the cast off finally and when he was in the brace. I'd think of things I'd like to say but wouldn't blog about them because I wanted the congruent timeline of events to be perfect. So for the last 10 months I've just stayed silent.

I can't wait and hope for my perfect timeline anymore. I need to write. In mid-April his pain started escalating again. This time we were prepared for it. The surgeon had told us it would happen and that we would do nothing until doing nothing was no longer an option. When day after day the pain level stayed high we knew it was time to bump up our doctor visit from August to immediately. New x-rays show his hip getting worse again and our surgeon had reached the end of her ability to help him. I'm not exactly sad about this; the surgeon we have had for the past year is a good doctor but not a hip specialist and doesn't have the warmest bedside manner for working with kids. Even so, it is difficult to hear that your son's condition is beyond the ability of his doctor.

The new surgeon team she referred us to took even more x-rays with some added angles. The short version is that my boy needs surgery yet again. The new team spent nearly two hours with us explaining everything they saw and the procedures they would like to do. It is major. Instead of focusing on the femur as they have in the past they will reorient the pelvis to cover the femoral head and possibly need to reshape the femoral head to fit in the hip socket. The positive in this is we really like the new team and we trust them. They were great with our boy and great with us. They appreciated and applauded the fact that I insist that Littlest be part of all discussions because it is his body and his healthcare. Yes, mom and dad make the decisions now but he needs to know how to advocate for himself and how to navigate the medical world as he grows. Someday he will need to do this on his own and I plan on giving him as much of a head start in that department as I can.

We don't have a surgery date yet. MRI is in a couple of weeks, pre-op is in early June, and then surgery as soon as they can arrange it in the schedule, probably late June to early July. Even though we knew at the last procedure that another was likely it is still difficult to hear out loud. We had so hoped to have a summer of fun not another summer of surgery. When the last visit had the results of "no change, see you in six months" we thought we had managed to at least have a summer without medical issues. But Perthes is a terrible disease and has not proven to be predicable in the least. 

I've had a hard time with this. I've told some people but I haven't wanted to tell everyone. I've wanted to hold the news close. At first diagnosis when friends would ask how they could help I knew, I had answers. Now as we approach the forth surgery, I no longer know what to say when asked. Four surgeries in three years, I feel like I should be a pro at this but I'm not. I feel like I should know what to say when friends want to help. Early on I felt like this was a fast easy journey. We have said often that in the beginning we understood Perthes more like an injury than a disease. We thought surgery would be one and done. Now three years later still facing the same things, I feel like a burden. I feel like my constant narrative of having a kid who hurts so much he cries himself to sleep and wakes in the night is difficult for my friends to still be hearing. I'm probably wrong about that but it is still my current perception.  

My Littlest is frustrated. He's hurting to the extreme. Hubby and I would do anything to take his pain away but we are helpless to make a significant difference. Brothers are stressed out about this. Sometimes average playing results in someone bumping the leg and tears. Yet somehow in the midst of it all we still laugh, we still play, we still love, we still hope. We hope that this will be the surgery that will bring relief. We hope that soon this will be a memory instead of a current reality. We hope for a cure for Perthes so that other kids can avoid the pain that our son lives with constantly. Did I mention that we hope this is the last surgery and after this he can go about the business of being a little boy?

No comments: