05 Jun Brenda’s Corner: Extended Hospital Stays
Written by Brenda Agnew, Client Liaison
“I will be happy not to see the inside of a hospital again anytime soon.”
These were my parting words as we left the NICU with Maclain after spending 3 months there after he was born. Clearly, I had no idea what I was saying when I uttered those words. That was the end of October, and by December we were in the ER of our local hospital facing an admission for pneumonia. It was around then that I realized that our days of hospital stays were not in the past but rather just beginning.
I am writing this edition of Brenda’s Corner from a hospital room at Holland Bloorview Rehabilitation hospital. Maclain had double hip surgery back in early April at The Hospital for Sick Children and after a week there we came here for another 6-8 weeks. This is our somewhere around 15th hospital stay since we left that NICU all those years ago. I would like to say I know the exact number of stays, but I just stopped counting.
His early days were always pneumonia or something respiratory related. We were told when he was 7 years or so, these almost twice annual admissions would slow up as his lungs started to get stronger. And almost by magic, we started to not be spending time in our local ER, bag in the car waiting for the x-ray to confirm what we already knew.
For a few years, we seemed to have a bit of a hiatus. When someone would ask the last time we had been in the hospital I had to stop and actually think, and then knock on wood when I said: “not for a while”. This luck, unfortunately, ran out a few years ago and we seemed to replace lung issues with GI issues, and our regular admissions started up again. I actually had to have a bit of a laugh this past December when I was at our local ER on a Tuesday for a broken ankle, then back again on the Wednesday with Maclain for what would be another week-long stay between two hospitals. I got many pity looks as I roamed hallways with my walking boot on and the comatose look of a parent who has been sleeping bedside. I have been rocking that same look for the last 8 weeks almost.
It’s tough, and no one can dispute that. Even the smell of lavender in our diffuser in our room doesn’t distract from the bad sleep, the constant noise, the forever blood pressure and temperature checks, the meals of cold tea and cafeteria food. We have been in the hospital for birthdays, Easter (twice), Thanksgiving, anniversaries, Mother’s Day, and I am sure some I have forgotten about.
I try to be grateful as much as I can. Grateful we have a health care system where I don’t have to worry about paying out of pocket for all of these admissions. Grateful for hospitals where Maclain can get what he needs, and who are specialists in their fields. Grateful for friends and family who always have us in their thoughts and make sure we feel supported, we are fed, and we are loved. Grateful for nurses who like to give hugs and cuddles to Maclain when I have to be two places at once and feeling guilty for not being with him 24/7. And most days, grateful I haven’t hurt anyone trying to navigate the hospital system with little to no sleep and so many other things going on all at once.
The reality is simply that with each trying or difficult experience we go through, like hospital admissions, I can try to kid myself that we can put a “ been there, done that” label on It, but having a child with multiple medical needs just means that I have to keep the hospital bag packed, the Starbucks card loaded, and maybe a wine bottle waiting for me at home upon our discharge.