Sunday, June 15, 2014


Sometimes I write to preserve my sanity. Sometimes I write to share my story. Sometimes I write to remember that shutting down doesn't help me or anyone else.

The last week has slapped me in the face. When my kids are awake I'm strong. When I'm alone in the quietness before bed, I am scared.  My husband reminds me that I wouldn't be human if I weren't scared but I've decided that logical fear is easier than emotional fear.

I was talking to my husband last week when my phone rang. There was no name on the caller id but I paused and said "Hang on, this is Children's Hospital" and I proceeded to answer the phone. I was almost immediately struck by the fact that Children's called and I recognized the phone number. That isn't the status that any parent wants.

This time it is my youngest. It started with a limp. Two and a half weeks later the limp had gotten significantly worse and so had the pain so I took him to the doctor on a Friday. She poked and prodded and decided that it didn't feel bone related and is likely a pulled/strained muscle. She takes blood to check for infection and tells me to give him ibuprofen three times a day, keep him off of it, and bring him back the following week if he's still not better.

The following Friday I take him in again because once again, not only is he not getting better, he's getting worse. Different doctor and she decided to take x-rays which I fully agreed it was time for. We sat in her office waiting for the results when she finally walks in and announces that she is waiting for a call back from Children's ortho clinic. SAY WHAT?!?!?

She tells me his hip is deteriorating and shows me his xrays. I'm no doctor and I could even see the problem with his hip on the xrays. Children's called back, said they thought it could possibly be Legg-calve-perthes disease* but that a specialist would need to confirm it. I needed to go home and wait to hear from Children's.

*perthes is an uncommon condition in which the blood flow to the femur stops which causes the ball of the femur to die. The hip then, with no bone to hold the joint, collapses. There is no known cause. It affects mostly boys but a few girls as well between ages of 4-12. *

Less than an hour later I recognized the number and answered to hear that they needed to see us Monday morning. Keep in mind this was a Friday afternoon. So this past Monday I took him to see the hip specialist who confirms the diagnosis of perthes and tells me we need surgery and an MRI which his assistant would come in to schedule. He gave a brief overview of what surgery would entail and told me that my baby would be in a wheelchair for three months post-op. He asked my son if he had questions, to which JJ shook his head.  Then like a fabulous pediatric doctor that he is, he asked my son's stuffed monkey, Rootbeer, if he had any questions. My son made Rootbeer shake his head no also.

The doctor asked me. I think I had a million questions and not one would come out. I knew I would have questions but the staggering weight of hearing that my baby needs a surgery that involves cutting his femur and recovery involves three full months of no weight bearing activities had completely frozen my mind. I did what moms do, I kept on being a mom. I didn't fall apart. How would that help? I simply stepped into a place of adrenaline and took the rest of the morning one step at a time.

The assistant came in and said the doctor was booked pretty far out but wanted to get us in sooner rather than later. My brain translated that to, the doctor is scheduling 3-4 months out by were going to squeeze you in in 3-4 weeks. Knowing that's what my mind heard, you can imagine my shock when she said "We can get you in for MRI this morning at 11 and we want to schedule surgery for next Thursday." WHAT? Did I hear that correctly?

The next 3 hours were spent getting crutches, getting the wheelchair order, filling out paperwork, and doing the MRI. *note to self and to any other parent who heard that their young child needs an MRI: putting a child on a table at lunch time and telling them to not wiggle is insanity. Even watching Scooby Doo while in the tube did not keep the toes from wiggling. Better option, feed said child FIRST!*

So my baby will have surgery this Thursday. We have complete confidence in the surgeon and have heard others who work at Children's say he would be their first pick if they needed hip surgery. That is comforting to hear.

And here in the space of quiet I mourn the summer break that won't be what we hoped for. Though this isn't life threatening it is life altering. Whether it alters for a season or a lifetime still remains to be determined depending on how much of the ball of the femur has died.

I worry like any mother would about the surgery, the pain after the surgery, the limitations of the wheelchair, that he will still be in the wheelchair when school starts back up. And I also know we will be ok. We will adjust, we have a great knack for that. We will continue to be strong, even when we're scared. We have an amazing support network. We don't walk this journey alone.

Thank you. Thank you to those who have send us notes, texts, emails, and Facebook messages. Thank you to those who have offered to bring us food. Thank you for the well wishes, thank you for the thoughts, thank you for the prayers. We treasure them all.

No comments: