The Unthinkable

Note: I am posting two updates in one day. Please do not read this one first. Scroll below to "Joyful Days". God gave us those to get us ready and I want you to know the joy we had this week before you read about how the week concluded.

OK, I know most of you are probably cheating and reading this one first, but I'll continue anyway...

As I wrote in the previous update (whom all of you compliant ones have already read..way to go!), Abbie had a wonderful week, and by the therapy session on Friday her body was in just amazing condition. Her muscles were so relaxed that we were able to move them any way we wanted with no complaint or resistance from her. It was almost strange, but in a wonderful way.

We got her on her knees, with her elbows resting on a foam square. That was a piece of cake for her, so we rotated the foam square to make it higher. Still not a problem. Our girl was blowing us away with her progress! Then..during a bit of a position change, she came almost up into tall kneeling (which is kind of like standing straight up on your knees). I was behind her, holding her feet, and just saw her bottom kind of shift to the right. When that happened, her knees bent way beyond the 90 degrees she's been working at. In that moment the screaming began.

It's not been unusual for Abbie to be uncomfortable after doing something new. So we took her home, crying all the way. After about an hour she calmed down and fell asleep, so it seemed that perhaps it was normal post-rehab soreness.

However, when she awoke from her nap screaming, we changed our minds. Unable to comfort her, we quickly loaded her for the trip to the ER. Ray called ahead and explained the situation, so when we arrived we jogged right in to the trauma room.

Abbie was in the bed where her life was saved, and the physician on duty was the one who resuscitated her. I had not been in that room that day, and felt privileged to be the one stroking her head now.

She was quickly given 2mg of morphine, which only moderately dealt with her pain. Things were not looking good. I already knew the truth, but was desperately hoping that I was somehow wrong.

A hideously painful round of Xrays confirmed my awful suspicions. Both of Abbie's femurs had been broken during therapy. I thought I might dissolve into a puddle on the floor. I recall turning toward the monitors and just whispering, "God, I know you are good. I cannot see it right know, but I know it."

The fractures had nothing to do with the surgery, but were rather down lower, just above the knees. In fact, the surgery sites looked great! Abbie's problem is that because she hasn't been bearing weight in so long her bones have become very, very weak. Her beautifully relaxed muscles had been deceptive at therapy, giving us signals that her body was ready to do more than it really was.

So, Abbie went into surgery around 9pm to receive 2 pins through each leg, and then new casts from each thigh to foot. This time they are fluorescent pink, as I've seen enough purple fiberglass for a lifetime.

The surgery went smoothly. She didn't have to be intubated, and I asked them not to catheterize her, so they didn't. She was on room air through the night, with pain meds to keep her comfortable. We had great nurses, so I was able to get a few hours of sleep after we were finally settled around 2:30am.

We were on the way home by 12:30 today. I was amazed that within just twenty hours we'd arrived at the ER, been diagnosed, gotten surgery and casts and been discharged. Thank you, Kapiolani!

Fortunately for us, and unfortunately for his wife and dinner guests, Dr. B. was the ortho on call last night (he did her big surgery). So, his very calm manner and my trust in him help me at least remain vertical. The bad news after the surgery is that he pushed the pins in with his hands...calling her bones "butter...cold butter, but butter." Yikes.

We will be exploring ways, both nutritional and more aggressive means to increase her bone density.

Right now we are almost too numb to cry. No Christmas shoes. No church on Christmas Eve. Back to square one. But, also I think through these years God has given us the gift of perspective.

Someone commented last night about what a setback this it. Well, yes. But, at the time Abbie was in a room on the floor where the oncology kids are cared for. A place where "setback" means the bone marrow transplant didn't take, the chemo isn't working, or the new tumor is inoperable. So, we've recieved a two-month bump in the road, not a permanent set back.

And, I know there will be good to come from this. As I looked at her surgery sites, and saw comparatively good bone there (on the Abbie scale), I wondered whether this new aggravation at the other end of her femurs may prompt them to create more bone there. "Perhaps" was the answer from Dr. D., the ortho on call today who also did Abbie's surgery. One of Abbie's PTs said, "Bone is always the strongest where it's been broken." Sort of like hearts, it seems to me.

Having JUST gotten to the point of having knees bend enough to use footplates and sit in a car seat like any other kid, I was worried about losing that. Dr. D. made my day this morning by saying, "This injury may even give her MORE knee flexion (bending).

So, today when speaking to the PT who was in the session on Friday, I recited all these "Good Will Come" affirmations. She said, "You are always so positive!" I said, "Look, it's just that we're in a place where it's 'be positive or die.'" So, we are choosing to move forward with hope.

Are we sad? Beyond words. Are we fatigued? Body, mind, and spirit. Is it unbearable to watch your daughter suffer? You know that answer. Are we relying on your prayers? Every second and for every breath.

On that note, here's a prayer list:

1. Pain abatement. She is in excruciating pain. Even sliding diapers under her bottom is torture for her.

2. Quick healing. The sooner we can get back to work, the happier we will all be.

3. Bone density. This is the long term solution. I asked the surgeon how we could get her bones stronger. "Weight bearing" was the reply. But, how to safely bear weight with fragile bones. That's the conundrum. We don't want this to become a vicious cycle...we try to bear weight, she fractures fragile bones, which we then have to cast, making them more fragile.

4. Stamina, for all of us.

Thank you for surrounding us with love and prayers. Times like this remind me that all of this is so much bigger then me, and I really cannot handle it on my own.

God is good!