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.