What Families Wish You Knew About Hospitalizations
When you hear that a child has been hospitalized, it’s natural to assume it’s a short stay. Maybe a few IVs, some rest, and then back home to normal life. For families like ours, though, hospitalizations are never that simple. They stretch far beyond just medical care and touch every single part of our lives.
As a mom raising a child with Primary Ciliary Dyskinesia (PCD) and Atypical Cystic Fibrosis or CFTR Dysfunction, I want to share what hospitalizations are really like from a family perspective — not just for Jentri, but for all of us. My hope is that this brings awareness, compassion, and maybe even encouragement to families walking a similar road.
It’s Never “Just a Few Days”
When doctors say “alright, we’re going to admit her for a tune up” we’ve learned to take it with a grain of salt if it comes from the ER doctor, the real decision comes from the Pulmonology and Infectious Disease Team. Cultures take time to grow, medications need adjusting, and allergic reactions or complications can pop up overnight. What starts as a short stay can easily turn into a lengthy one. From the outside, it may sound like a predictable timeline, but for us, hospitalizations often feel like a winding road with no clear end in sight until we get those discharge papers——and even then like our current situation, Jentri had 5 days of freedom and is back in for 14 days.
Hospital Life Becomes Everyday Life
Life doesn’t stop just because we’re in the hospital. Bills still come due. Work doesn’t pause. Siblings still need love and stability. For parents, it means juggling schedules, laundry, phone calls, lots of drive thru food stops, and even running businesses from a hospital room (Hi! That’s me✌🏻). What looks like “just sitting by the bedside” is actually multitasking on a whole new level — trying to keep every piece of normal life moving while advocating for your child’s care at the same time.
It Impacts the Whole Family
Even though Jentri is the one admitted, all five of us feel it. Her siblings miss her when they can’t visit, or they miss me when I’m splitting time between home and hospital. Routines get flipped upside down, and sometimes, just to see the right specialists, families are separated by states. A child’s hospitalization is never just about the patient — it’s a ripple effect that stretches through the entire family and sometimes it’s crippling.
Support Looks Different Than You Think
The truth is, it’s often the small things that mean the most. A warm meal, a gas card, or someone dropping off coffee can feel like a lifeline. A quick text or prayer reminder goes further than you know, even if we don’t always have the energy to reply. On the hardest days, it’s not the grand gestures but the little bits of kindness that help us feel seen and supported.
We’re Grateful, Even When We’re Exhausted
Weeks of alarms, doctors’ rounds, and heavy conversations are draining. Some days, exhaustion overshadows everything. But even in that, we never stop being grateful. Grateful for wise doctors. Grateful for every person who checks in. Grateful for every small step of progress Jentri makes. Gratitude and exhaustion can live side by side, and often, they do.
Closing Thoughts
Hospitalizations will never be easy, and they’re not something a family ever “gets used to.” But by sharing what it’s really like, I hope it gives a little glimpse into the unseen side of this journey. More than anything, I want you to know that families like ours are doing our best to balance it all — and that your prayers, kindness, and compassion mean more than we can ever put into words.
Best,
Kursti, Founder of Breath in Bloom Collective
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