Update on Hands (graphic photos)

Before I start this post, please be aware that there are some fairly gruesome photos of his hands post-surgery at the bottom of the text.  I’ve included them not for sensational purposes, but in the hopes that any families who might one day be facing the same procedure will know what to expect. 

It has been just over two weeks since Marshall’s operation to separate his fingers.  Incredibly, he spent just one night in the hospital before being released.  I would have felt less anxious at the hospital, but every time we go in for a stay, I swear I come out a little more unhinged and jumpy.  So, armed with a prescription for morphine (for Marshall, not me) and his hands and lower arms heavily wrapped in bandages, we went home.

For the first few nights, sleep was scarce as Marshall was clearly feeling some discomfort in his hands, which is to be expected given the fact he had just had his fingers separated and skin grafted on to the newly exposed areas.  In addition, he had a long wound along his lower stomach, from hip to hip, where the skin for the graft was taken.

A week later, after a checkup to determine that the healing process was going smoothly, we began taking the bandages off to wash his hands and a few days ago started using a cloth to gently rub his hands in the bath.  As you can imagine, Marshall is not a big fan of this.  He whimpers as soon as I touch his hands, and sometimes, his hands are still so raw, there’s some bloody spotting on the cloth.

A parent on one of the Apert syndrome Facebook groups recently posted an article about PTSD in parents of children with special needs, especially when there was no indication before birth that anything would be different.  I don’t want to overstate or exaggerate what it’s like, but in all honesty, washing his hands in the bathtub is one of the most difficult things I’ve had to do in life.  While it does appear everything is healing nicely and headed in the right direction, his little fingers are still hard for me to look at, and I often have to close my eyes or quietly sob so he doesn’t hear me.  And the whimpering.  The whimpering breaks my heart.  The sadness in his little whimpers haunts me.

He will likely spend a few more weeks in bandages before they can stay off.  And hopefully, there are no complications or problems, and we can begin some therapy on his hands soon so he can learn to use his newly separated fingers.

If you have a weak stomach or don’t feel the need to see the photos of his hands, please don’t scroll down any further.  I’ve left a bit of space so you don’t accidentally look at something you can’t handle.  To all the families who have gone through a similar surgery,  if you have any wisdom or advice to share with me, I would love to hear it.

 

 

 

 

Surgery Day

*** will update the page as the day goes along

4:00 – Marshall is out of surgery a bit earlier than expected and is recovering from the procedure right now.  All went well.  Hands are heavily dressed and he has a long scar across his lower belly from the skin graft.


8:00 a.m. – He just went in for his anesthetic. We are headed home for a few hours to rest before coming back in the afternoon. The surgeon estimates that he’ll be done around 5:30 this afternoon.


 

6:30 a.m. -We are at the hospital and in the pre-op room. Marshy was not happy to be woken up at 5:30. Thank you Auntie Krista for the operating day outfit!

Watched a very, very brave little boy of about six years of age walk out of the waiting room and through the doors for his procedure.  These are tough kids. Saw some real courage and strength there as he fought back tears.  Whoever you are, I’m proud of you, little guy.

Fingers

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My new favourite photo of Marshall – blurry because he’s a fast little guy now.

Last week, Bridget decided to show Quinn the first Jurassic Park movie (more than two decades old, but still holds up decently, if you care for my opinion; “best film score ever” raves Bridget).  The best part of the movie wasn’t the movie itself, but rather it was the experience of watching Quinn’s reactions and thinking back to my own first viewing of the movie.  This feeling was even more pronounced when we watched Back to the Future together the next night – a movie that is as firmly in my Top 10 as The Rocky Horror Picture Show, Pretty In Pink, and Mannequin.  I could relate to all of the emotions he was exhibiting and his reactions to the parts he could understand.  It brought to mind incredibly vivid memories of watching it as a nine year-old and the instant love that blossomed in my heart for Marty and George McFly and all things 1955 (maybe the best year ever for rock music?).

Most parents, I suspect, have gone through similar experiences as their children, and this is a way to relate to your child.  How many times have our own parents said to us, “I made such and such mistake when I was your age.  Trust me.  I know.”

Well, with Marshall, there is so much to which I just cannot relate.  I can’t relate to his two surgeries – he’s got me beat 2 to 1, but regardless, his were far more serious than my broken leg.  I can’t relate to spending months in a hospital bed.  I can’t relate to being born with the fingers on both hands fused.  And I won’t be able to relate to what effect his Apert syndrome will have on his future.

Tonight is Marshall’s last night with fused fingers.  Tomorrow morning, he goes into surgery, and 8 hours later, he will have fingers.  In a few weeks, when the dressing comes off for good, he will discover that his hands will be different from what he has known all his short life.  I can’t wait to see what he does with them.

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I’ll miss your old hands, Marshy.  They are, like you, beautiful.

Hands

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I’m in the midst of spending my first summer at home with the boys.  Last summer, Marshall was still going in and out of the hospital with every cold he caught, so we didn’t end up spending a lot of time together at home.  This summer has been one of fairly good health, so other than scheduled appointments and an MRI last week, we’ve lounged around the house a lot, gone to parks, and run down just about every Pokemon we could get our mobile phone hands on (that sentence is going to sound really dated in a few years). 

You’d think with the good health, things would be great, and in many ways, it has, but the calm before the approaching storm (more on that later) has given me the time and space to digest what’s been going on, and frankly, I’m angry.  I’m resentful, and I shouldn’t be by now.  I just can’t let it go.

Now that he has been out of the hospital for his longest stretch yet, Marshall appears to be making up for lost time developmentally.  He’s playful and he’s learning to communicate.  He’s on the verge of walking without holding on to anything.  Watching him interact with Quinn is a joy to behold.  Sometimes, I’ll ask him to touch Daddy’s face, and he’ll reach his little hand out as far as his stiff shoulders will allow, and he’ll gently touch my cheek. 

His hands were the first indication the instant he was born that something unusual was going on.  I remember seeing his fused fingers, and thinking maybe he had some sort of sac covering his hand, but in my mind, I knew something was up.  I’m not the only one who had a hard time holding his hand at first.  It was difficult to feel the lack of a space between his digits for a long time. 


I love his little hands now.  The feeling of a hand that smooth and unbroken on my face is still shocking, but there is nothing softer than the palm of his little curved hand.  He has adapted incredibly well to the limited mobility in his fused fingers and his small bent thumb.  He picks up food and toys with ease, and delightfully bangs away on the piano day after day.  It’s also the hands of other children his age, though, that bring up the anger in me the most. 

It’s ridiculous that I can’t get past this. I’m going to be honest – I still cannot look at photographs of friends’ newborn babies without getting angry, and I hate myself for it.  I can’t bring myself to “Like” Facebook posts where I can see fingers, and the mere sight of those damned Anne Geddes photos of babies in flower pots makes me hot with rage.

My rage is for my son’s surgeries in the past, and the one he’s about to have at the end of this month to separate his fingers.  My rage is for the fact he’ll never be able to bend his fingers like mine when he wants to play the piano or hold a pencil.  My rage is for the surgeries on his skull that he’s going to have over the course of his childhood.  It’s for the looks and stares he will have to endure, and for all the doubters who will write him off before they give him a chance.

Most of the posts on this blog over the last year have been pretty positive.  I try to keep it that way in case new parents of a child with Apert syndrome come across the blog are looking for comfort or perspective, but the reality is, I suspect a lot of people in my situation probably have bouts of anger and depression over the cards their child has been dealt.  Thank goodness for the internet and the presence of an online community of people who can lend me their experience and wisdom.  I’ve had a lot of comforting words sent my way by parents who have gone through everything I’m going through now, and for that, I thank you (especially you, K.M.S. – you have no idea how much everything you’ve told me means).

Maybe the anger I feel is what I need to carry me through the doubts that float around my head all the time.  Perhaps it’s the fuel I need to fight for my child when the public system is inevitably going to try to tell me he can’t do this or he can’t do that.  I don’t know. 

In those times, I look at his little face and his hands and wish I could switch places with him and take away all of his pain, all of it.  All of it.  Right now, tonight, I hate this world, but tomorrow, when I pick him up and he lays his sweaty curls on my shoulder, hopefully things will be alright.


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As I mentioned earlier, we’ve noticed that one of the things that makes Marshall happiest is music.  He does a little dance when he hears music, he’s mesmerized when I play the piano or ukulele around him, and a few times a week, he’ll sit on my lap at our piano and pound the keys for fifteen or twenty minutes at a time.

On August 30th, Marshy is going is scheduled to go into Sick Kids for an operation to release his fingers.  This eight-hour operation is a big one, and it is going to be really interesting to see how he reacts to having fingers for the first time.  His fingers will never work like mine – he won’t be able to make a tight fist, and his thumb is shorter and at an angle – but this should still make an enormous difference for his development.

I’ve never thought about how lucky I am to have my hands.  It will be exciting to watch as Marshall discovers his.

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