How to Pack my Medical Emergency To Go Bag for my Medically Complex Child
When you bring home a medically complex child, the hospital does everything they can to prepare you. They teach you how to suction a trach. They teach you how to change it. They teach you about G-tubes, medications, equipment, and what to do in an emergency. You leave with binders full of information and your head spinning from everything you’ve learned.
But here’s the thing…
No amount of discharge teaching can prepare you for the first time something happens at home.
The first time the trach comes out. The first time the G-tube gets pulled. The first time you’re halfway to an appointment and realize you forgot the one thing you always use.
Those moments are overwhelming, not because you don’t know what to do, but because you’re trying to think clearly while your adrenaline is through the roof.
Recently, I’ve been consulting with a durable medical equipment company in Texas to help improve the discharge process for families bringing medically complex children home. One of the projects we’ve been working on is creating an emergency go bag for new families. As we started building it, I couldn’t stop thinking about all the things I wish I’d had—and all the things I wish someone had told me.
My First Time
Four days after we brought Paige home from the hospital, her G-tube came out. We didn’t notice it happened between her 12 AM and 4 AM feed, and so when I got up to feed her at 4 AM her stoma had already closed. I remember wondering what the scab was on her tummy – it was her stoma. This was only 4 days after we had been discharged from the 3 months stay. All of the sudden every time the doctor said “When you leave,” “When this happens,” came back to my head. I had the “pack emergency bag” on my list but I didn’t think I’d need it for weeks. It took us about 45 minutes to get everything and get out the door – and my girl hadn’t’ been fed, and she’d need her morning meds at 8.
I remember feeling like my girl was hungry because I simply didn’t pack a bag.
So, I thought I’d write a blog about what I put in my emergency bag. It has evolved from 4 bags – to 3 – to 2 – and now to 1.
Start With What You Use Every Day
Start with the easy questions as a medically complex child: What do you reach for every single day? When it’s time to feed your child, what’s the first thing you grab? For us, it’s the extension set. How do you give medications? For us, it’s syringes and a medicine cup. If your child has a trach, what do you use every time you suction? Those supplies belong in the bag.
If your child is vent dependent, do you have extra HMEs? Do you have the little connector pieces you don’t think about until you suddenly need one?
What about your portable pulse oximeter?
Now ask yourself one more question.
What happens if the battery dies?
Pack the charger.
It’s funny how often it’s the little things that can slow you down the most.
The goal isn’t to carry every medical supply you own.
The goal is to carry the things you use all the time and the things that would be hardest to replace if you suddenly needed them.
Organization Matters More Than You Think
Over the years, I’ve also learned that how you organize the bag matters almost as much as what’s inside it.
Can you find the suction catheters without digging through everything?
Do your feeding supplies stay together?
Are the things you use the most easy to grab?
Because when you’re stressed, you don’t want to be emptying your entire bag onto the floor of an emergency room trying to find one syringe. Have I done that? OF COURSE! Every mom on earth has. But you learn, and maybe reading this blog at the beginning will help you avoid that in the future.
Don’t Forget About Yourself
Here’s something else I don’t think we talk about enough.
Pack a pocket for yourself. Seriously. I have a secret mom pocket which has my chapstick, gum, lip gloss for when my self esteem is low, etc etc. It helps. If your child ends up admitted unexpectedly, those little things won’t fix the situation, but they will make a long day just a little more manageable.
As medical parents, we’re so focused on taking care of our children that we often forget we’re part of the equation too. Taking care of yourself isn’t selfish. It’s part of taking care of them 🙂
You Don’t Need the Perfect Bag
If you’re just bringing your child home, don’t wait until life settles down to pack your emergency bag. Life probably isn’t going to settle down for a while. Start with the things you know you’ll need tomorrow. Add to it as you learn. Change it as your child’s needs change.
Your emergency bag doesn’t have to be perfect. It just has to be ready.
Because when the unexpected happens—and eventually it will—you’ll be grateful you only had to grab one bag instead of trying to gather your whole life in the middle of a crisis.
I created my “Dr. Moms Medical To Go bag checklist” for those of you who may be beginners – please reach out to me if you have suggestions, and share with other moms! 🙂
