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.

 

 

 

 

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12 thoughts on “Update on Hands (graphic photos)

  1. I know they’re tough to look at but I promise you, after 4-6 weeks swelling and gruesomeness disappears. The graft begin to look seamless with the normal skin. Kees’ pinkies are still red from his syndactyly release in June but it’s hard to see the actual grafts at this point. As well, my brother has also had skin grafts and the redness takes a couple of months to disappear but the skin looks really good after 4-6 weeks. His hands are beautiful. Just wait till he starts using them!

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  2. I started following your blog recently. I had never heard of Apert syndrome (or I couldn’t remember it from Nursing studies 30 years ago) so I clicked on the link out of curiosity. Then I saw that SWEET FACE!, Marshall’s, not yours (haha) . I haven’t commented before. I never felt that I had anything to say that might be helpful to you, other than saying that I care about your family and wish you all the very best. I am one of the people who looked at the pictures of Marshall’s post surgery. I work as a nurse and a vascular technologist so I wanted to see how his surgery went. I can say with all honesty, that those are beautiful fingers! The surgical team did a great job. You are doing a great job! Take care.

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  3. I agree his fingers look great. In previous ‘life’ I worked on as a child life therapist on Peds so I often sat with kidlets during post-surgical bandage removals when family couldn’t be there. Ftom the perspective of having witnessed many unveilings, I think they look great.

    From my perspective of a special needs teacher with experience with a sweet Apert’s student, I think Marshall’s finger look wonderful. As in, here comes real trouble because he’s going to be getting into even more mischief than ever before. And… just think how well they will serve him as he begins school and learns!

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  4. Marshy is so lucky to have you both as parents. No doubt this is really tough for you both xo. While the healing process may take some time, it looks like the surgery was a success! Those little fingers will make some serious moves pretty soon, he’s one tough cooke. Thank you for sharing your journey, you’re doing great!

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  5. Look at those beautiful little digits. I’m no expert – I have a different set of challenges to manage – but I am amazed but your strength and his resilience.

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  6. Those fingers look just fabulous!! We didn’t get to see A’s fingers until a month post op.

    One thing the surgeons didn’t prepare us for was the lack of individual finger usage initially. ‘A’ wouldn’t touch anything for about a week after the dressings came off. Then she started to use her hands but in the same way as before the seperation. Despite lots of OT and encouragement it’s taken around 4 months for her to start trying to pick up items with her ‘pincer’ grasp (or rather, A’s version of it). Last week she managed to pick up a single pea with one hand and put it into her mouth. Which literally knocked my socks off! So far that’s a one off, and she still needs lots of support to take hold of certain items and textures, and needs help to manipulate things. She just does things in her own sweet time 🙂

    Well done for doing the dressing changes. I was fortunate enough to not have to do them for her syndactyly release, but did twice daily dressing changes with her omphalocele. I found it to be one of the most heart wrenching, traumatic experiences. If I could have handed that part over to someone else I would.

    Love your blog. Thank you so much for sharing.

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  7. Amazing. That stands for the parenting, strength you are exhibiting and Marshall’s tolerance of this whole procedure. Kudos to you all. Hugs all round. Xo

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  8. I’m in the ETYM group, so acquainted with Brig and think your blog posts are so well written and heartfelt. Most of all, I think Marshall is an amazing, adorable kid with amazing parents 🙂 Was so happy to hear the surgery went well, and I think his hands look amazing!!!!

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  9. My sister Mary was born in 1965 with Aperts syndrome, few cases ever heard in that time period. I would love to discuss her case as well as your case.

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