Grace for Rett » Grace's Life with Rett Syndrome

Deck the halls with broken femurs

“I have little bones” -Dolly Parton

From our family to yours, a few ideas for holiday activities:

  • Decorate cookies
  • Ice skating
  • Caroling
  • Family game nights
  • Watch your daughter suffer the most excruciating pain possible for a week before finding out she’s broken both femurs

Ya you heard that right. Grace broke both femurs during a seizure on the 22nd and because she can’t talk, we didn’t figure it out until the 28th.

I’m home after 3 days in the hospital with Grace and my eyes burn with exhaustion so I’ll give you the quick version:

On the 22nd, during a nappy change, Grace was hit suddenly with a “tonic clonic” seizure which her dad didn’t see coming. Her legs shot up in the air and (we now know) while the legs went one direction, the hamstrings pulled another and the strength of the muscle contractions snapped both of her femurs in the same place just above the knee. All the way through the bone.

Long story short, she’s in two very heavy casts for what could be as long as 8 weeks. Her legs are sticking straight out and so until we can modify her wheelchair and find the best place for her recovery, she’s on her back in a hospital bed. Our little English house, although beautiful and equipped for her normal life, isn’t equipped for the level of care she will need through this recovery. I don’t think our wheelchair accessible van will fit her in this situation so wherever she ends up next, she will need to be ambulanced there.

This new challenge has brought to light the fact that she has osteoporosis which is to be expected in a non-ambulant person like Grace and often, it’s the first big break which brings that diagnosis to light. So this will forever change how Grace is manually handled and cared for. No more clothes which are difficult to get on. No more changing her nappies/diapers like we have always done. Right now, it takes 4 people to change her and when she is out of her casts, it will still require two.

You may remember last December she experience a tiny break in her hip and a few days later, got her first bedsores (more on that here). Well those sores are still being managed a year later and so in addition to all this, we’re keeping on top of keeping her heels from touching the bed.

So with all of the specifics out of the way, some moanings from me…

It’s been said (and confirmed by Google) that breaking one’s femur (the longest, thickest bone in the body) is “more painful than childbirth”. I’ve heard men say that about all manner of testical related phenomena but I’ve read many’a woman verify that they have done both and, indeed, the “femoral fracture” was far more painful than childbirth.

So imagine that happens to you on both legs. And you can’t talk. And it remains for a whole week (for reasons I can’t explain at this time but some day I may get to tell you all about it. It’s a very sad story) and on top of it all, your parents think you just have soft tissue damage and so they keep trying to exercise your legs, get you dressed, move you around like it’s no biggie.

This scenario keeps playing in my mind and my stomach drops, I start sweating, get near to vomiting at the pain I feel when I imagine the pain my baby girl was in all that time.

So over Christmas, she did what any body under such strain would do…she shut down. Grace checked out of reality for 6 whole days. She slept about 23 hours a day. She shook. Moaned. Sweated. Ground her teeth. Curled up like she was bracing herself constantly. We thought she had the virus which had been going around so we gave her simple pain relief and monitored her temperature. Bloodwork showed that she didn’t have markers for infection and so we can only conclude that this was her body responding to excruciating pain. Fun fact: did you know the word excruciate was invented just to describe the torment and pain of death by crucifixion? I think it’s an appropriate word in this case.

She learned that week that anyone coming near her meant pain and so when people walk in the hospital room she begins to shake with fear that they will cause her pain. She will slowly need to learn that the worst is over and that the painful part is done. She has cracked half of a smile today for the first time, but anyone who knows Grace knows how out of character she is right now and sometimes I fear that this will have forever changed her.

The boys seem to be taking this like just another day in Rettland, but Steven & I are utterly reeling. I just don’t know how much one couple are supposed to be able to survive. But even moreso, this has been torment for our little darling girl and nothing -NOTHING- is worse than watching your child suffer while you are helpless to fix it.

F a c e b o o k