Real Talk! Mateo at Bloorview Children’s Rehabilitation Hospital.

It took about a week and a bit after the new diagnosis and putting Mateo on the ventilator for us to get sent to Bloorview. To be honest, at first when the respirology team told us that after already being at SickKids for a month, we would have to go to another hospital for 3 more weeks to train on the vent did not sound like a very exciting idea for us, we were tired, overwhelmed by the new diagnosis and equipment and we just wanted to go home. Little did we know that we would find long lasting friendships at Bloorview and a team that we now miss and truly admire. Let me tell you a little more. Mateo got transferred to Bloorview in an ambulance, I went with him and the ride went well. When we got to Bloorview we were greeted with smiles from the nurses, doctors and from our neighbour across from our bed spot. We got the corner spot right by a window where Mateo could look out and stare at the leaves of the trees as they blew in the wind (one of his favourite things to do at home) and there was so much happiness that surrounded the whole place. Everything was set up to make children smile and enjoy their time there. He didn’t need to be connected to a big monitor, only the monitor that we have at home and there was no alarms, no stress, no anxiety and sadness as there is many times when you are in the ICU at SickKids.

It wasn’t long before Mateo stole the hearts of the nurses, and playroom staff who eagerly wanted to do anything they could to make his stay at Bloorview comfortable and enjoyable. Mateo had his first big bath in a long time, he got to play in a big mat and started to learn how to bum scoot, and it only took a week for Kyle and I to be trained and ready to take him on walks in his stroller to the beautiful spiral garden. This garden is truly an oasis for parents and patients at Bloorview. I remember the feeling of taking Mateo out for the first time, it was freedom, it was a milestone going out with a vent, and it was a huge accomplishment for Mateo and for us! Mateo had the biggest smile and enjoyed watching the squirrels, hearing the birds chirp and the trees as they danced in the wind.

Now let me tell you about the therapist there. Woah, I wish that they had told us that going to Bloorview meant that Mateo would have top of the line therapists using play therapy to help him accomplish so much! If I had known how far he would come and the type of amazing people we would meet there, I would have never been hesitant to go. I called it “Baby boot camp”. The first week the therapists booked time every day to see Mateo, get to know him, and his abilities and come up with a plan for him. He would see physiotherapy, speech therapy, occupational therapy and child life almost every day. That’s at least 3 hours of therapy a day! It was wonderful. When Mateo first got to Bloorview he was very shy, attached to us, and frightened of the people wearing masks, goggles and yellow gowns. But it wasn’t long before the nurses earned his trust while doing vitals, and he started actually cooperating by sticking out his arms for a temperature and a blood pressure or “arm hug” as we call it. The therapist got to know him and understand the best ways to communicate with him, through play and using a variety of toys.

The physiotherapists worked with Mateo to; bend his knees when sitting, how to bend his knees and push his body forward as he stands, how to balance on an exercise ball, how to put himself in a proper crawling position, how to sit up from laying down with little assistance, how to go on his knees, and how to take assisted steps! This is HUGE for Mateo. These accomplishments will serve as a platform for Mateo to learn how to crawl and walk.

The OT worked with Mateo to: use his fine motor skills by taking things off of toys or putting things into toys. To create a mealtime routine where Mateo sits in his high chair and plays with spoons and plates getting him used to the different things that are used to eating and getting him comfortable with holding spoons and eventually putting them in his mouth. Playing with food, touching it, sensing it on his fingers, perhaps putting his fingers in his mouth and tasting his food. Playing with water on his tray, getting comfortable feeling different types of textures. These are all things that Mateo has not had much exposure to as he is tube feed and has spent much of his life at the hospital. We will continue to build on these skills at home with the goal of someday having Mateo be able to eat food by mouth.

The Speech and Language pathologist worked with Mateo: to first understand the many ways in which he communicates with us. She made a vocabulary list of the signs that he uses in order to say that he wants something. She also helped build his tolerance for playing with one toy at a time, building resilience and patience. This was something that Mateo and mommy and daddy had to work together at. Usually we knew what Mateo wants before he even asks for it, but a big part of communication, is waiting until the child tells you what they want and only then giving it to them. So, this was a big learning curve for us as well. Mateo also practiced anticipation games, where he would learn that something was coming and he had to use his communication skills to ask for it. It was amazing to see how in the short period of time we were there Mateo became more creative exploring toys in ways he had never done before, he became more inquisitive at exploring his surroundings and became more efficient at communicating with everyone around him.

Child Life Specialist: we met with the Child Life Specialist a couple of times every week. Together we came up with a poster that talked all about Mateo so that anyone who came to his bed side would understanding him better. Some of the things that this poster included were: Mateo's favourite shows, what to do if Mateo wakes up from a nap crying, and a song that you can sing every time that you suction him. Mateo loves music and we used the song "sss is for su su suction su su suction" to help him become comfortable with being suctioned again, as with his respiratory issues at SickKids and the amount of deep suctioning that was done there, he had become very afraid and apprehensive to be suctioned. And guess what? after only a couple of days of singing the song he was back to not being afraid of suctions, yey! As well the Child Life Specialist came up with a schedule for Mateo with pictures where we could start to show him what activities where coming up at first and what activities were coming up afterwards (i.e., first --> then). This is a helpful visual communication tool for Mateo as he gets older and continues to better understand his routine.

One of the things that we will remember most about our stay at Bloorview is the long lasting friendship that we made with our neighbour across the room from us, baby Mazen and parents Kareem and Rawan. We were able to share their first Canada Day with them, many stroller rides, dance parties, midnight meals, and lots of wonderful and enlightening conversations about their journey with a complex baby boy. We know that Mazen and Mateo will be friends for life! We even came up with a song for them "I love to dance, dance, dance, with Mazen and Mateo"..."I love to sing, sing, sing, with Mazen and Mateo"...

While we were at Bloorview we had two team meetings, an initial meeting at the beginning of our stay to talk about the length of our stay there, our training, and the plan that each of the therapists had for Mateo, and a discharge meeting with all of the therapists from Bloorview, his social worker, his transition coordinator, his respirologist, his nursing team, his team at the LHIN, and his team at SickKids. These meetings were informative and very heart warming for us, as we were able to talk about how far Mateo has come and how grateful we are to Bloorview and all of the staff that helped make our stay one that we will never forget!

We are so grateful to every single person who has had a hand in helping Mateo, and our family; whether through prayer, caring for him, operating on him, identifying his diagnoses, helping him with his diagnoses, social distance visits, facetime calls, giving our family support through our GoFundMe page, making Mateo an ambassador for their business and showing us compassion and inclusion, and for all of the LOVE, THANK YOU!

We are so thankful and feel so blessed every single day for our community and our tribe. We continue to enjoy Mateo every day, in the good times and even in the challenging ones <3

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