Lessons from living in McMaster Children’s Hospital for over a week
After living in the McMaster Children’s Hospital in Hamilton for more than a week as a caregiver for my newborn who was seriously ill with Entero Rhinovirus and RSV, here is what I’ve learned:
No matter how stressed or exhausted you are, be kind. Be kind to everyone. Try softer. Be gentle. Smile. There’s enough fear, stress, and panic in this place, don’t add to it.
If at all possible, switch off with another caregiver to go home for 24-36 hours. It will give your body space to feel, process, and recalibrate.
If you need a hospital-hospital transfer and go with Orange you will have the absolute best experience. They are Ontario’s critical care medic transfer team. The highest level of training and experience. Our province does a few things well, Orange is at the top of the list.
Things in a hospital can move extremely slow and at times this can be exhausting and frustrating. But slow means your child is stable. People move extremely fast when they need to. Learn to be grateful for slow.
The Ronald McDonald Family rooms are incredible. Comfy chairs, fireplace, books, free laundry, coffee/tea, snacks, frozen meals, and breakfast foods. This place knows how to care for caregivers. I guess something really good can come from giant fast food corporations.
After a few days this place can feel like a jail. Step outside for fresh air. Do squats at the children’s playground on the roof at 6am. Do whatever you need to do.
Whatever services are offered to you, say yes. Even if you think you may not need it. Say yes to everything.
McMaster cares for ALL kids extremely well: especially siblings. They show as much care and support to siblings as those who are admitted. People’s entire jobs are to care for families and siblings of sick children. They are angels in disguise.
The nurses are there to care and support you. Don’t feel shame for asking questions, needing help, or interrupting them. You are not a burden.
The PICU (Paediatric Intensive Care Unit) is a good place to be in. Even though it seems “scary” when your child needs higher level care, it’s more specific support, more comfortable, and 1:1 or 1:2 nurse care.
While I was here the PICU staff were taking a group picture because their team won an award compared to other similar teams in other children’s hospitals. They created a holistic rehabilitation program that now children’s hospitals globally are implementing. I believe it. Give them all the awards.
Find quiet and stillness. Use the Spiritual Room (no crying children there). Put in a podcast. Take deep breaths to centre yourself. It’s overwhelming and chaotic at times.
It’s not possible for you to manage the details of other people's jobs. Stay in your lane and trust the nurses, doctors, dieticians, and respiratory therapists to do their jobs. Track progress and steps, but don’t mentally juggle all the small details. Focus on your unique role as a caregiver.
Start a note on your phone to record questions or details of care. It can be easy to forget with sleep deprivation, a million details, and constantly changing health status.
Hospital parking really is as bad as everyone says. Why has no one solved this problem for families already?
Hospitals are more calm and chill on weekends. It is lovely.
It is miraculously possible to sleep 8 hrs at night in the room with your child. Bring your own pillow, ask for more blankets, whatever you need to help you sleep. It’s worth it.
At times you catch yourself seeing your reflection in mirrors and feel self conscious. It is easy to be discouraged with your appearance when you feel tired, haggard, in old clothes, and not moving your body well. But have compassion and grace for yourself. It’s really all the lighting. Hospital lighting is terribly unflattering.
When you notice volunteers, cleaning staff, and those working overnight in the cafe, go out of your way to thank them and share the value of their hard work and time. These people are the backbone of this place.
Someone told me McMaster Children’s Hospital is one of the top hospitals in the country. I believe it. Everyone here is brilliant, highly skilled, lovely, and kind.
Having a hot shower helps you feel more human. Living in the hospital feels like camping, and camping is not my vibe.
No one is rushing to discharge your child. This is a blessing. Doctors need to be 300% certain about sending a sick child home. You do not want to go home and be anxious and need to come back and go through emergency triage all over again.
Take a moment (or more), to look around and notice the other children and families here. Pray for them. Many children are horribly ill and their families have barely any support. Be their prayer support.
We are so thankful to be home now. Having our newborn experience two viruses and being in the hospital for over a week has forever changed me. I will never forget this time, and never forget all the amazing people we experienced along the way.
I am forever grateful for McMaster Children’s Hospital.
