Friday, January 15, 2016

Perthes update

I've mentally started this post at least 20 times but haven't actually written it. I think there is just so much to say that I don't know what to say. In June 2014 my littlest was diagnosed with Legg-Calve Perthes disease. Yeah, I know you have no idea what that is. Most people don't. Quite honestly, I wish I didn't need to know what it is. But that said, I have become fluent in the speech of the disease over the past year and a half.  Quick overview....blood flow to the femur becomes interrupted which caused, in our case, a complete deterioration of the femoral head. Surgery, wheelchair, physical therapy, and a lot of high strung craziness ensued.

In October we started noticing him limping more, subconsciously guarding his leg, and hurting at night if we had spent much time walking during the day. Just before Thanksgiving his pain had escalated so severely that we ended up in the ER for pain management. Xray, labs, narcotic drugs, nothing gave us answers and nothing helped the pain. A nurse told me it was just a perthes flare up. She expected that I knew about them and that they can last up to five days. Ummmm, nope. Up to this point, flare ups were a day or maybe two.

The uncontrolled pain lasted the full five days and then miraculously went away. Four days he was great. Then four more of excruciating pain. Then three of being ok. Then pain again. The roller coaster was exhausting for all of us. I couldn't believe that the pain that had escalated for six weeks to bring us to this was just a flare up. He was missing too much school. I was missing work.

The night he woke up from a dead sleep crying was the night that sent me over. I called the surgeon the next morning and begged for something to help the pain. It had gone on for too long and was too severe to be a flare up. She scheduled a steroid injection for the next morning. It didn't help instantly but by the third day his pain had gone from consistently hovering in the 7-9 range to hovering in the 3-5 range. It was enough improvement that he was able to move without "Ow ow ow!" He was able to sleep through the night and able to return to school.

One set of xrays showed the bone to be "spotty". The surgeon ordered an MRI and prepared me that she thought he was possibly having a new episode of blood flow interruption in the femur. This was so discouraging to look and think we might possibly be back at the beginning again. MRI was just before Christmas.

Last Monday the surgeon called to tell me that the MRI results were good. The spotty appearance of the bone is new bone growth not further bone death! The blood flow has not been interrupted a second time. His bone did grow back flat and is not an ideal shape. There are things he physically cannot do because of the deformity of the bone (like sit "crisscross" or sports that involve crouching like baseball catcher). He will need hip replacement as an adult. At this time though, we are not looking at any further childhood surgeries. That is a relief!

Remember in the second Harry Potter movie when Professor Lockhart tries to mend Harry's broken arm but instead removes all the bones from his arm? When he goes to see the nurse she has this conversation with him.

"He should have been brought straight to me. I can mend bones in a heartbeat but growing them back...."
"You will be able to wont you?" 
"I'll be able to, certainly. But it will be painful. You're in for a rough night, Potter. Regrowing bones is a nasty business."
I showed littlest the clip from that scene and he smiled. I told him he's like Harry Potter and that Harry understands how much it hurts when bones grow back. And just like that our new mantra became "Regrowing bones is a nasty business."  And he always responds with, "Yes, yes it is. A very nasty business." It keeps us all smiling and pushing forward when we feel overwhelmed with his pain. Once again it is the smallest of things that encouraged us and reminded us to keep pursuing hope. We finally see the light at the end of the tunnel.

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