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!