One year ago today, my daughter underwent hip replacement surgery on her left side. By this time of the evening, I was sitting next to her, exhausted and mind blown –
watching her sleep. She had already been through three hours of surgery, a few
hours of semi-sedated recovery, had groggily accepted visitors and countless
bouquets – and had been out of bed bitting for almost an hour. When I think
about the day itself – and the anxiety leading up to it – and the difficult
days following – it comes back to my heart and I am a little nauseous.
But with the benefit of a year between us and that day – I can reflect a little
more clearly on the whole thing.
To start with the negative – there is still a part of me that is surprised,
angry and unwilling to accept that my eleven year old had to undergo such a
thing. There is still the fresh memory of hearing “joint replacement”
somewhere in the first year after diagnosis as I was doing research – and it
held as much reasonable possibility as living on the moon – it seemed so remote
and unlikely.There is still a little screaming left in my soul that there were
not enough treatments to help her in the early years… not enough available to
prevent such permanent damage to my child.
There is still the lingering worry about what this surgery will mean for her
future – how long will it last? What will revison be like? And there is the
knowledge that sometime, too soon, she will repeat the whole thing again on the
Moving on to the positive….. it actually was not as bad as I thought it would
be. I know that’s terrible to admit…. but seriously? She had no idea of the
magnitude of the thing. She knew the basics…. but not the in depth logistics
– the sawing off of this, and new installation of that. And so, she truly had
no pre-conceived notion of what recovery would be like. When the doctor told
her that she would be out of the hospital in two to three days, she took him at
his word. And so she assumed that it would be that way. And so it was.
Our eyes were huge and it was hard not to giggle when she complained about the
leg circulation cuff. After you have a major surgery, they often attach a cuff
that looks like a blood pressure cuff to your leg – and it regular pulses to
keep your circulation going to prevent blood clots. It wasn’t the large
incision she complained about… or the pain…. it was the cuff. And the
hospital food with it’s lack of flavor and adequate red jello.
We left the hospital on Friday after two days of “recovery” in the
hospital after Tuesday’s surgery – and I was in a panic. Caitlin had been out
of bed a total of five times – with great difficulty and screaming. She had
eaten very little and had been to the actual bathroom only once. I could not
imagine how I was going to take care of her..she required lifting and carrying
and maneuvering around stitches and bandages. I envisioned a midnight trip to
the emergency room with an infected incision or something terribe like that.
Instead – she asked for Taco Bell as soon as we got home. The next day, she
went to a craft store to buy things to bling out her walker – and she walked
through the store herself for twenty minutes. It turns out that shopping is a
terrific motivator for an eleven year old girl. On Sunday, we decorated the
walker…..and she was up an around the house pretty quickly. By Tuesday night,
one week after surgery… a friend called and asked if she could go out for ice
cream. She gladly went and refused to bring her walker. While she was gone, we
folded it and leaned it against the wall to get it out of the way. She never
used it again – it sits in our garage waiting for the right hip surgery. Her
one scar is so small it is covered by her bathing suit. About two weeks later,
she spent a whole day walking around an amusement park.
I know this is not the way it is for adults, young adults – and the many people
I spoke to about replacement surgery. Recovery usually takes longer – with more
pain and more therapy. But going in, we did not have other families to talk to
about how it would be for a child…. Caitlin was the youngest person her
surgeon had ever “completed”. In my heart, I expected weeks of
recovery at home… out loud, we just told her that she would be home in three
days and that the old pain from the crumbling hip would be gone. That was no lie.
And her youth and strength worked in her favor… it was remarkable.
It was a major change for Caitlin – and it was all good. She went from taking
vicodin several times a day to deal with the pain, to starting middle school
with no pain medication and very little noticeable limp. As much as we worry
about the future, we never regret this decision…. and we are reminded
frequently of all the good it has brought her.
This August 11, instead of being in the hospital – Caitlin is on vacation.
We’ve been camping in the Redwoods – hiking the beaches looking for driftwood,
climbing the fallen trees, and roasting smore’s. She has hiked miles every
day… and though she has to still be careful not to overdo it (that right hip
still pains) – she never had to sit out and she never had to take pain meds all
week. Her new arthritis treatment is working controlling the the inflammation
in her other joints – and for now, the right hip is status quo. We thought we
would be doing that surgery this summer…. but the deterioration has not
worsened. We’re hoping to give her a little more time to grow… but it will
probably be next summer.
The Foundation documented Caitlin’s surgery story. It’s a video that is
diffiult to watch… but as I said, even as her mother…. this disease and its
ramifications is often a truth still difficult to accept.
I stand by the video… and I hope it causes people to want to act. It motivates
me. There are lots of positives…..Had my daughter been born ten years
earlier… she would have many more problems than she has. We are lucky in so
many ways. But until this disease is understood enough so there is an
identified cause, and successful treatments… our happy ending is not good
enough. She should not have had this journey. Kids should not have to do this.
About that happy ending though….. this is an anniversary. Many parents
remember the date of their child’s diagnosis. Caitlin’s was July 15, 2001.
Every year on that date, I remember…. and it’s melancholy trip. Always a
little sad, though we end up focusing on how things are improving. This
anniversary though is a true celebration! My now twelve year old titanium
princess is living a great life with little pain right now….. and that is a
very happy outcome!