Arden: One Year Home!
It’s December 15th, and that means Arden has officially been home for ONE WHOLE YEAR! I must say, what an incredible year it has been!
On December 15th last year, after Arden had spent 230 days in the hospital (5 at the Royal Alexandra Hospital and 225 at the Stollery Children’s Hospital in Edmonton), we made the 5+ hour drive home. After months of the highest highs and the lowest lows, backslides, learning, planning, and preparation, our sweet boy finally got to be in the comfort of our own home. It was a momentous occasion; one that we were so excited for, but also a little nervous about.
On the day we drove home, we were excited, and naturally a little worried. It was a big adventure for Arden, as he had never spent more than a couple hours at a time away from his hospital bed. Arden had never gone without his ventilator humidifier for that many hours. We didn’t know how he would respond, because he had never spent more than an hour or two on his HME (heat moisture exchanger). Hospital protocol usually requires parents to take trach-vented children home for a 24 hour hospital pass before being allowed to discharge home. We couldn’t do this, because we don’t live in Edmonton. So as we drove home, we were headed into the unknown. Even though he was 7.5 months old, we had never looked after our baby by ourselves for more than a few hours. But we weren’t scared. We had prepared, and studied, asked questions, and asked the universe for this moment. We were ready.
We made it home without hardly any hitches in the journey. Arden had one moment where he had a big “desat” (his oxygen saturation dropped drastically) during the ride home, but that was only because he had had a big poop and was upset about that occurring while he was in his carseat! As we rounded the corner onto our road into our acreage neighbourhood, my heart swelled. I hadn’t set foot inside our house in 236 days. To add to the overwhelming feeling of joy that I was already experiencing, I was surprised to see that our family, friends, and community had created a reverse parade on our road to welcome us home. Horns honked, banners were held, and loved ones waved, hooted and hollered to let us know how excited they were for us. It was amazing! (You can see my video response here).
Our first few days home were overwhelming in other ways. We were so excited, but we quickly had to sort out night care so that we could get some sleep. The first little while was a bit rocky, and it took time to get into a rhythm. The first night Agatha watched Arden, we actually slept in and she had to wake us up so that she could go home (haha). I think it was the first great sleep that Brodi and I had had in nearly 8 months!
I also needed to adjust to being alone with Arden all the time when Brodi was at work. I had been doing Arden’s care by myself in the hospital for months, but it’s different when you know that you have medical professionals nearby if there is an emergency. I quickly had to become comfortable with knowing that if an emergency occurred, there was no backup, only me.
It’s incredible to look back on where Arden was a year ago, and everything that he has accomplished since then. His movement has increased astronomically, and he has gone from being our tiny little jelly bean baby, to being a busy toddler.
When Arden first came home, he could barely come off his ventilator for 2-3 minutes at a time. We had tried 5 minute trials in the hospital, but with each one, he would panic and gasp for the air that he so desperately needed. I barely had time to run as fast as I could to go pee when I was alone with him for fear that his vent circuit would pop off while I was away from him. Arden also panicked whenever we would go outside. He was terrified of the cold, and would cry every time we took him outside. His cuff was up all the time, and he wasn’t able to produce any sound or cry out loud. I needed to have a watchful eye on him every second of the day so that I knew he would be okay. Even walking 10 feet away into the kitchen to grab a snack was worrying.
Today, Arden is still keeping me on my toes, but in much different ways! He now comes off his vent for 30 minutes at a time, 4 times per day. The other parts of the day, he pulls off his vent circuit so often that I struggle to get anything done because I’m running to put his circuit back on! Our little turkey has decided that the circuit is in his way, and that he’d like it off so that he has freedom of movement for playtime. He is so busy, that even though he can’t yet crawl or walk on his own, he scooches and rolls to get what he wants. Somehow he’s always getting into things that he shouldn’t be, just like a typical toddler. He makes his needs and wants known, and has become excellent at communicating.
Arden doesn’t yet speak, but as his pediatrician once said, “Holy sh*t he has a great voice around that trach!” Arden attempts to say some words. For example, he shouts “Hellaaah!” for “hello” and regularly attempts to say “I love you,” in a way that only parents and grandparents could decipher. But his communication is incredible. Arden knows many ASL signs which he uses regularly, including: more, eat, medicine, sleep, bed, suction, funny, dad, poop, yes, dog, I love you, play, and all done. Arden also knows all of his body parts, and can point to each one as we ask him where they are, including: head, hair, face, eyes, nose, ears, mouth, tongue, teeth, belly, bum, legs (right and left with prompting), knees, feet, toes, arms, hands, and fingers. He even knows where his “wiener” is….thanks to Brodi teaching him that! (lol) He points to what he wants for toys and signs “yes” or shakes his head “no” when we ask what he wants.
Movement wise, Arden still has, and will always have limitations. But he has come so far. Despite his muscle and joint contractures and scoliosis, he is able to sit on his own, and use his legs to pivot and look around. He can’t bear much weight on his own with his legs, but he’ll use those legs in a speedy running motion when held up and zoomed around the house. He absolutely loves bouncing around in his Jolly Jumper, and he has a walker that we pull him around in. When asked if he wants to “go zoom zoom” he will sign “yes” and wave his arms around as if he is using a steering wheel. In September, Arden had surgery to correct the vertical talus in each of his ankles, and in the new year, he will likely have an extensive knee surgery in order to help his range of motion and his ability to use his legs. It’s clear that the muscles are working well to create movement, he just requires a little help to give them a functional extension!
Arden has fully functional movement in his arms and hands, and despite the contractures in his fingers, he has excellent fine motor skills for a 19.5 month old. From a distance, you might not even notice that Arden’s right hand cannot yet fully form a fist, and the fingers on his left hand do not straighten fully without the splint he wears at night. We love seeing the little details he notices on toys. Lately, he is very into HotWheels cars, and he loves the hand-me-down car track that his grandma Cindy brought over for him to play with.
In February 2022, Arden will undergo surgery to correct his ptosis (drooping of the eyelids) and we can’t wait to see how this change will improve his ability to interact with the environment around him, and further calculate his movements.
To say that Brodi and I are proud of Arden would be an understatement. We are constantly amazed by our little man. When Arden was in the hospital, each room he was in had a whiteboard on the wall where we could write his likes/dislikes, and care tips for our nurses. I would always write a particular quote there, and to this day I think that it suits our Arden so well. The quote is: “Sweet boy, you are more than we ever expected, and better than we ever imagined.” If I could only choose one sentence to describe our amazing Arden’s existence, that would be it. We never expected this life, but it’s more incredible than we ever could have dreamed.
Cheers to ONE YEAR HOME, what an amazing ride it has been!
XO, Rayel