amaya at lake

amaya at lake

Saturday, December 31, 2011

Trying to explain lengthening and the fixator to family

     Over the past few weeks we've been able to spend a lot of time with family celebrating Christmas. It was nice seeing family from all over. Several times the conversation turned to the upcoming surgery (a little over two months away!) I tried my best to explain about how the lengthening will happen and what the fixator looks like and will work.   I talked with my aunt Rosa and uncle Alex and explained that Amaya would wear the fixator for about ten months and that she would have daily physical therapy. I told them that I was a bit nervous/queasy about the pin site cleaning (every day we have to clean all the areas where a pin is entering her leg, about eight spots). My aunt asked if a nurse would come do it, ( I wish!) but explained that we had to do it along with turning the screws several times a day. Her face was one of shock. "How can they ask you to do that to your own child? How can you do something you know is hurting her?" I answered honestly, "Trust me I know. I've been dreading it ever since I heard about it several years ago. The only thing that I can think is that turning the screws will make her leg longer and cleaning the pins is so vital to prevent infection. I have no choice, we have to do it. But, yes I'm scared and nervous and wish I didn't have to do it." She gave me a look of empathy, which I appreciated.
     I showed her a picture of an x-ray with the fixator on and one that showed the pin sites. She couldn't believe how long the pins were  and how deep they went in and out of the leg (they're about five inches long and go into the bone about an inch and come out of the skin about another inch). She showed my uncle Alex the picture and they both just stared at the pictures for awhile trying to figure it out. It's pretty amazing to see a picture, especially if you've never seen one, which most of us haven't.  Thankfully other parents have created blogs for their children and have posted pictures of the fixator, the x-rays, legs, etc. The blogs and pictures have been so helpful (thank you all for your blogs).
     After a few minutes my uncle said he was a bit confused "I don't understand how you can stretch a bone, bones are so hard." I told him that they'll break her femur in about two places. He was kind of shocked, "Are you serious? With everything else their going to do, their going to break her bone too? Oh my! That's terrible." (I'm add libbing since I'm translating from Spanish to English).  I explained that the broken bones will be attached to the pins, the pins attached to the outside fixator. As we turn the fixator it pulls the bone apart, and new bone will grow. The bi-weekly appointments will show the doctor how the new bone is growing. The daily pin cleaning will help prevent infection. The daily physical therapy will help her tissue, muscles and ligaments grow and keep her knee mobile.  It's pretty amazing. They both gave me some encouragement and offered to help any way possible.
     The following day I was talking to my sister in law and shared my conversation with my aunt and uncle. I showed her some pictures as well ( a visual is always a great way to show people what a fixator is).  She could hardly believe how long the pins were and how far out the fixator came out of the leg and just how big it is. There are two types of fixators, the round ones that look like a halo, and the straight rod type that go along the outside of the leg. Amaya will get the straight rod type, that will go from her upper thigh down to her shin. At her shin the rod arches across her leg.  I explained that although Amaya will wear the fixator for ten months, only about four months of that time is spent growing new bone. The rest of the time is to allow the new bone to harden and heal so that when the fixator comes off, her leg will be strong and not break.
     Each time I explain what will happen, and what the fixator looks like I'm a bit humbled, a bit nervous, a bit scared, and a lot hopeful.


  1. Wonderful explanation Ceci, of the procedure, and the steps to be taken after the surgery and during Amaya's recovery process. I know posting this takes a great amount of your time & effort, but it is dearly appreciated by our family, as well all the many other families who may be going thru this as well. Love you, Paco

  2. Glad the posts help, they certainly help me. And I hope they'll help anothe family on this journey.