This week, Kane was at the Stollery Children’s Hospital two different times for his bi-annual cardiology appointment. On Monday, Harrison took Kane for his echo and then on Thursday I took him back again for his ECG and his appointment with his cardiologist.
There are so many things I love about the Stollery. My favourite things always involve the people. We love seeing the staff that follow Kane, whether it is his cardiologist, Dr. Hornberger, the nursing staff, techs and administrators, or the residents that are learning the ropes. There are so many people involved in just the cardiology clinic on 4C and we always feel well cared for.
Another amazing thing the cardiology clinic has begun doing is having families fill out a questionnaire upon arrival related to their child’s heart condition and any other medical concerns. But the best part of the questionnaire is that it also asks whether we would like to see the unit social worker regarding any concerns related to behaviour, education, financial support, feeding… Amazing! As a teacher, I think this attention to detail is phenomenal.
What we do not love is the fact that twice a year we have multiple appointments for the same clinic. Sometimes, when we are really lucky, we manage to talk central booking into scheduling the echo, ECG and doctor visit all on the same day, but that is not usually the case. In talking with families and some of the staff, I learned that this is often an issue for families. For parents, it means taking two days off work or bringing cardiac kids and possibly their siblings in twice. The kids themselves often need to miss two days of school and that is not taking into account any anxiety that may be a part of their medical experience. And just imagine if the family lives out of town, doesn’t drive, or has mobility issues on top of that. Lucky for us, we live in Edmonton, Harrison and I are able to juggle our work schedules and Kane is not at all anxious about medical appointments at this point. Cardiology is not the only specialty we see, though it is the only one we have to book two days with.
In the grand scheme of things this is not our most pressing issue. Kane will be followed by cardiology for the foreseeable future. We will see cardiology absolutely any time they ask and we appreciate every person who keeps an eye on Kane’s ticker. But now that I know this is a concern that arises for other families I will start talking about it in the hopes that by bringing it to light things will change.
Patient Centred Care and Family Centred Care are priorities for the Stollery Children’s Hospital. I personally think they are doing an exceptional job and things at the hospital keep getting better. Thank you to the staff and volunteers that work so passionately to make a difference for our hospital kids and their families.
One thought on “This is Us – CHD”
Keen observations…. especially mentioning those parents who can’t afford time off work, don’t drive and live far away. A friend set up a trust at Children’s in Seattle specifically to provide transportation for families in need….