Marshall is entering his ninth day of his third go-around at the hospital today. The flu virus he contracted would have made any child sick, but with his respiratory issues, this was especially dangerous for him. Choanal stenosis is the narrowing of the passageways at the back of the nose. If he had been born with an atresia of the choana instead, they would have surgically fixed things as that would have meant a complete closing of the passageway. Instead, he has adapted early on to being able to breath through his mouth, something that babies do not generally do for the about first half year of life. The team of ENT surgeons attached to his care have decided that the risks of surgery outweigh the benefits at this time, and the hope is he will outgrow these issues as hits the four-month mark and the passageways widen naturally. In the meantime, we affectionately refer to him as our little snorting pug – and this is when he doesn’t have any congestion.
I’ve spent the past seven nights with him in a private room at Sick Kids. At night, the nurses have been an incredible help, as they endeavour to not only help make Marshall more comfortable, but to make my stay there less difficult. Besides staying quiet and turning off unnecessary lights on the floor, I have woken up several times in the middle of the night to find that his nurse (it has been a different person most nights) is at his bedside and is soothing him back to sleep. Sometimes, I don’t wake up at all. I am grateful for those extra minutes of sleep.
Before leaving his room, whether the visit is to bring a container of pumped milk to heat up or to check his vital signs, the nurse always asks, “Do you need anything else before I go?” A few nights ago, when I just could not fall asleep all night, I joked about wanting a time machine or a way to alter the past.
These quiet nights at the hospital have had a few effects on me, other than the need for a large coffee first thing in the morning. I have grown much closer to my son during this week. When he was first born, his fragility and differences made me, in all honestly, scared to hold him. I was scared to touch his hands, which are different. I was scared of the thoughts that came into my mind as I held him. I was scared of growing close to him in case something more serious were to happen to him before he came home with us.
Several times last night, and each night before it, he fell into a stupor after his feedings. Eyelids heavy (both his and mine), I would lay him down in his crib and sit down on the little sleeping area of the room. Each time, I would sit still and wait for him to fully fall asleep before laying myself down for some rest. His little mouth is almost always agape, pulling in enough extra oxygen to compensate for his narrowed nasal passageways. And with that wing as quiet as it is at night, away from the hectic environment of the multi-bed intensive care units and 24-hour supervision by staff, his breathing came in little snorts and snores. The gentle rhythm of his breathing was a welcome sound, signifying that all was alright. I have come to love that sound. Instead of the white noise machines or sleep sheep that many parents have, I would love a recording of his breathing to play on a loop by my bedside. Bridget might disagree with that, as we have only recently gotten rid of my own snoring issues.
They turned off Marshall’s monitor last night before I went to sleep. They monitored his oxygen saturation levels and heart rate from their main area in the wing, but I wasn’t able to see if he was struggling. It’s part of the transition back home, which hopefully happens today or tomorrow. I need to learn to trust that I can tell when he is having trouble without the help of the monitor. Besides, if we have him on a monitor at home, I will spend the entire night watching the screen, waiting for the loud beeping alarms to jolt me out of my sleep.
The hospital has come to feel like home, sadly. The Hospital For Sick Children in Toronto is world-famous for good reason. Besides the amazing professionals on staff, there is a clear understanding of what the patients’ families need in order to make it through the hard times of long, anxious stays. There is a family lounge where you can sit down together and eat. On the main floor sits a daycare where children can be left under the watchful eyes of volunteers. There is a library where you can go to find children’s books or literature for parents who are looking for more information about their child’s condition. I am too embarrassed to say how much time I have logged on Netflix over the past week – far more than I have watched in the previous year. Doctor Who has been my faithful companion, or perhaps I have been his. Thank goodness for the free wifi.
I yearn to sleep in my own bed, but I am also comforted by the safety of the hospital. It’s safe for Marshall to be there when he has discomfort, and it’s much easier to busy myself and avoid unhealthy thoughts. I wish more than anything now, more than a billion dollars, world peace, or the ability to fly, that Marshall could have perfect health, but the reality is we have many more long stays in the future here.
A few times, outside of the ward, in the busy atrium, food court, or hallways, I have recognized nurses that have taken care of Marshall over the past five weeks. One in particular even stopped when she recognized us, and asked about him by name. We were amazed that she remembered us despite only caring for him for one night last month.
Thank you to everyone involved in his care for the amazing and difficult jobs you go to every day and night. I will never be able to adequately express our gratefulness for your help.