Up front, I will admit that I am completely incapable of scheduling and keeping track of Marshall’s health care. Left to me, he would miss most of his appointments. In case anyone is struggling with keeping track of what medical care your child with Apert syndrome might need, I’m going to try and keep an updated list of the facilities and professionals who are part of Marshy’s care.
If you think I might have missed an important area of care, please let me know and I will add it to the list. Note also that care and certain procedures offered differ in various parts of the world.
Plastics – syndactyly release; eventual cranial and possibly facial surgery
ENT – tubes for drainage of ears; tonsils and adenoids removed; partial septumectomy; monitoring hearing along with audiologists
Orthopedics – monitoring lack of normal shoulder range
Opthalmology – monitoring vision and checking for scarring due to inability to fully close eyes at night; monitoring pressure on the eyes (an indication that skull surgery is necessary)
Respirology – sleep studies to determine severity of sleep apnea and to find possible solutions such as using a CPAP machine
Neurology – using yearly MRI scans to check for increased intracranial pressure and enlarged ventricles
Dentistry – dental and possible jaw issues being monitored
Cardiology – apparently, heart issues are common; Marshall’s echocardiogram at 9 months did not indicate any heart problems
Occupational Therapy – monitored and lead the recovery from his syndactyly release (healing from skin grafts to his hands)
Outside of the Hospital
Speech and Language Pathologists – this is key, especially since many of our children are late to hear or speak; look for courses on how to work with your child to develop language skills
Occupational Therapy – home visits to work with Marshall on using his unique and stiff fingers; strengthening his arms and shoulders
Family Therapists and Social Workers – there is no shame in taking to people who can guide you through the powerful emotions that are inevitably a part of raising your child, as well as the effect it can have on siblings
Hearing – there are many options for assistive hearing devices you may need, in addition to devices that will your child’s teachers may need in the classroom
Government Grants – there is help out there depending on where you live; Canada has a few provincial and federal aids available. If you need help filling out an application form, let me know and I’ll try to help.
Schools – As a teacher, I can tell you that some schools may try to give up on your child. Do not let them push you around. Advocate loudly until they can do it for themselves. If you ate having problems with your school board being unsupportive, send me a message with any questions and I will answer them to the best of my ability.
AboutFace – without their emotional support, I’m not certain I personally would have survived the fear of the unknown. Take a look at their website. These are beautiful parents and families who can guide you through the scariest and hardest moments.
Facebook – there are several private groups where news, questions, and tears are shared. Meeting and talking to others who have gone through what our family is going through had been enormously helpful.
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.
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.
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.
We’re at Sick Kids for Marshall’s second attempt by the ENT team to improve his breathing and lessen the severity of his obstructive sleep apnea. He went into the operating room at 9:30 this morning and was out before noon. He looks good, if a bit groggy, and is currently lying in his Nonna’s arms, drinking a bottle of diluted apple juice.
Tonight, I get to spend the evening sleeping by his bedside in the constant observation room on the fifth floor, listening to the beeps and boops of the machines. It’s not our usual seventh floor private room with the One Direction poster behind the door, but maybe that will be our accommodations tomorrow night once he’s off painkillers.
When Marshall was first transferred to Sick Kids at the tender age of 1.5 days old, time spent at the hospital consisted mostly of crying and worrying. With each overnight stay, it has become a bit easier and more comforting. I don’t know if that’s a good thing, as I wouldn’t want any parent to get to the point where they can find their way from the Tim Horton’s to the free newspapers by the elevators with their eyes closed. Still, it feels safe here, and at the very least, I don’t have to do any housework tonight. Also, I might try to break my record of four sub sandwiches in one day tonight.
Hopefully, this surgery makes it a lot easier for the little Marshmallow to breath at night. I was looking forward to perhaps sharing a CPAP machine with him one day, but it would give me great joy to know he doesn’t need one.
In case Subway sandwiches is reading this, I will not say no if you send some freebies upstairs tonight. Please, no mayo.
I had surgery once, about eighteen years ago, when I broke me leg. I remember waking up and being on a morphine drip and feeling euphoric. Unfortunately, I thought I was a tough guy and insisted on checking myself out of the hospital despite the doctors’ warnings that they weren’t going to give me morphine to take at home. My friend Steve picked me up, and I proceeded to spend the next week in a sweaty, delirious agony. I was definitely not tough.
Marshall has been on morphine since coming out of surgery Wednesday evening. He’s being weaned off it slowly, but I can’t imagine how painful it must be for him when it wears off now that he’s taking it orally and not on a continuous drip. They drilled into his head through his mouth to widen his nasal passages. The thought of that gives me shivers. He’s sleeping next to me in a constant observation room (he’s out of Intensive Care), probably dreaming about cats, vats of breast milk, and board games (I, too, dream about two of those three items).
His appetite is still poor; I can’t blame him for not wanting to eat with a swollen mouth full of stitches and a swollen throat from having his tonsils and adenoids removed. The poor guy fell asleep while I was feeding him in a high chair last night.
Other than an overnight stay for a sleep study last month, we haven’t had to spend any nights at the hospital since June. I had forgotten a lot of what that’s like. The noises. The lights. The constant crying and moaning from patients in pain. The slippery vinyl of the armchairs that fold out into a makeshift bed. Waking up and going to work but not being sure what day of the week it is.
I listened to an incredible episode of the podcast Death, Sex & Money yesterday. The episode focused on a mother of two teenaged boys with autism. The episode opens with her saying that if she had known what it was going to be like, she would never have had children. I got choked up hearing that line; in the early days after Marshall’s birth, the same thought selfishly crept into my mind. Another incredibly heartbreaking sentiment from the father was that he says he would have been a great father, even though his partner says he is an incredible dad. The reasoning behind that line is that there are so many things they thought they would get to do as parents, and none of it has happened like they expected.
Life is so fickle and random. We were so, so close to having an average two-child family, but instead, this is the path we’re on. I’ve spent so much time with Marshall that there’s no way I would wish him – as he is – away even if I could, but I’m looking at my little fluff next to me with bloody foam crammed up his nose and it makes me angry and sad still. I’m definitely more hopeful for the future than I was nine months ago, but I’m not sure I’m any less scared. This was the first surgery of his life, and unfortunately, not the last. With every procedure, though, I know it gives him a better quality of life and a better future, so I hold on to that.
Again, thank you to everyone for your support this week. Thanks to the surprise meal drop-offs, I’ve gained about ten pounds and can no longer fit into my pants, but then again, I’ve always liked the look of hospital gowns.
Here’s to a bright future of cats and board games.
Restless night last night with the surgery today. We both took the day off from work to be here with Marshy. Keeping him occupied from 9:00 a.m. until 1:00 p.m. without any food or liquids was easier than I thought it would be. We just took turns lugging the turkey around the waiting area. I was probably more difficult than he was.
It’s 2:30 p.m. now, which means he has been in surgery for about an hour. He probably spent much of that time with the anesthesiologists, so surgery is probably just beginning now. It was hard to pass him over to the doctor. He looked so cute in his little hospital gown. We gave him big kisses and now, it’s a waiting game. Thank you, everyone, for the messages of support and love.
Thank goodness for free Wifi in the hospital and the Ronald McDonald room. I’ve spent more time in this room (for families of patients in certain wards) than I have in my own basement the last nine months. It really is a refuge for parents who are too tired to think and need a place to heat up food, take a nap, watch some television, or, in today’s case, resist eating some treats that someone has brought in:
FINALLY – after months of asking, Bridget has agreed to write down some thoughts:
“How are you guys doing? Are you ok? Do you need anything?”
These are the 3 most common questions we have received since Marshall’s crazy entrance into this world on February 21st, 2015. So I thought I’d take the time to actually answer those questions now.
How are you guys doing?
I can only speak for myself but, honestly, it depends on the time of day you ask me. On a weekday morning, when I’m running 40 mins late and trying to get two kids out the door, I’m not ok. At that time, I feel like an epic failure who can’t do anything right and indignant at the same time, that I don’t have full-time domestic help. Fast-forward to the minute I sit down at my desk at work and I feel like a superwoman who should have THUNDERSTRUCK played loudly on the school PA as I enter the building because, hot damn, I am DOING IT ALL!! At dinner time, I’m back to being a failure and then when the kids are both in bed, Marshall snoring loudly and Quinn barely making a sound, I’m mostly anxious to get in bed and figure out what I’m going to watch on Netflix for a few minutes to turn the day off and gear up to do it all over again tmrw.
Wait, did you mean “how are you guys doing now that you have, what the Ontario government refers to as a “severely disabled” child?”
Ah yes, that *is* what you meant.
It’s hard to answer that question because it’s like asking me how I feel about not having feathers or not being able to breathe under water or climb a tree like a squirrel. Marshall is Marshall and he is as much a part of me as my own arm. I don’t know how I feel about my arm but I know that it’s a pretty darn important part of me and if I didn’t have it, life would be very different than it is now.
Are you ok?
Our family (Team Ku) has experienced some pretty incredible acts of selflessness and generosity these last 9.5 months. In our darkest, most heartbreaking days, friends and family have put their own lives on hold to drag us up from the sorrowful pits of despair. I’ve written about the Ronald MacDonald House Lounge on the 4th floor of Sick Kids a few times but this place is something else. Here, Dennis and I are able to spend anxious hours together with homecooked food from friends and neighbours waiting for Marshall to wake up or have a procedure or, like today, come out of surgery. It allows us to catch a nap in a comfortable place, turn off our brains with a bad cooking competition reality show or catch up on the blog.
There were some pretty significant times I can remember where I was definitely not ok. When Dennis and Marshall went by ambulance to the hospital the day he was born and left me sobbing in a puddle of afterbirth, alone in my basement with the midwives buzzing around doing midwife-y things, I was definitely not ok. When we brought Marshall back to the emergency room and his O2 saturations dropped down to 30% and the team called an “emergency response” for neonatal respiratory/cardiac failure and 20 nurses and doctors came running full speed into Marshall sick bay and he was surrounded 3-people-thick on all sides and I was so far away from him, frozen in fear with no voice to speak up, I was definitely not ok. When the geneticist told us that we’d be lucky if Marshall’s cognitive abilities allowed him to be able to “count money and use cooking equipment” in order to live independently, I was absolutely not ok.
Now? Now, when I come to Sick Kids, I feel like I did when I was in high school in Grade 12. I know all the good spots to hang out and I’m not afraid of the big kids anymore. The emergency room is old hat now. Marshall’s doctors and nurses don’t have the “final say” in his care. We do. His parents. And there is something awesome about finding your voice with healthcare professionals. As for Marshall being “lucky” to live independently, after connecting with other people in the Apert community, we now know how very uninformed that diagnosis was. In fact, not two days after we had that talk with the geneticist, I got a message from a woman with Apert who is in the process of completing her PhD. Just like with Quinn, there is no bar, no limit and no ceiling as to what Marshall is going to do in his life.
Do you need anything?
If you don’t know my husband, his mood is directly related to how close he is to food. Food is close by = happy Dennis. Food is not available = look out, everyone. So, let it be known that we will never say no to food. In all seriousness, those food drop off and deliveries baffle me. I don’t understand, for the life of me, how you people do it. I can BARELY feed my own family let alone cook up delicious food for another family. You are all an anomaly to me. Thank you. THANK YOU from the bottom of our stomachs and hearts!
4:45 p.m. – He’s out of surgery a bit early. His ENT surgeon Dr. Probst said it went very well. Tubes in the ears, took out his apparently huge adenoids as well as his tonsils, and opened up his nasal passageways. He’s going to have foam in his nostrils for the next week, so it’ll be mouth-breathing for the next while. Marshall will be in ICU tonight with a nurse monitoring him. Waiting to see him in about half an hour.
He’s spending the night in the ICU with Bridget checking on him periodically. I’ve gone home for the evening, hopeful that the surgery will make a huge difference in his breathing. This was the first of, unfortunately, many surgeries for Marshall, but I suppose it went as smoothly as we could have possibly hoped. He will probably be in the hospital for a week or so before they take the foam gauze/stent thingies (very medical term, I know) out of his nose. Thank you, everyone, for your support. Here’s a photo of the poor little muffin in his ICU bed. Goodnight!