When Elle first came home from the hospital, I remember thinking . . . Now what?
For months we had nurses, doctors and routines built into every single day. The beeping machines, the med schedules taped to her isolette, someone always double checking our double checking.
And then one day . . . it was all on us.
And if I’m totally honest? It was SO overwhelming. I remember standing in our bedroom staring at bags of supplies thinking how am I going to set all of this up? Like how do I even do this?
Nobody hands you a manual for bringing home a medically complex child. You learn as you go. And SO much of what I’ve learned has come from other moms who were willing to share what worked for them.
So today I want to pay it forward and give you a little peek into how I organize Elle’s medications and medical supplies . . . in hopes that it helps another new medical mama navigating this season.
The best is to watch the walk-through video on my instagram, but I’ve also written it out for you in this post too.
The Command Center (aka My Dresser)
Everything lives on my dresser in our room, in a vertical storage container with drawers. Vertical is the key word here – it maximizes space and keeps everything easy to see at a glance.
Here’s what’s in it:
The syringe drawers. I have all of her syringes sorted by size and I STOCKPILED them. This was a huge huge game changer. When you have enough syringes to get through a full week, you’re only washing them once a week instead of standing at the sink every single night. Trust me on this one.
The random-but-necessary drawer. Scissors, pens, tape and things like that. You never know when you’ll need to cut something at 2am and you do NOT want to be wandering the house looking for scissors.
The meds tub. All of her medications in one spot.
The dirty syringe container. Everything used goes in here during the week and then it all gets washed at once. One and done.
And then her water for flushes and a basket of extra meds sit right there too.
Watch how I set this all up in my instagram reel.
The Medication Sheet (Do This One First)
Above everything, I have a printed sheet with ALL of it . . . every medication and dose, her typical vitals, her feed schedule, every doctor, supplier and pharmacy number we could ever need.
When you’re running on no sleep, or when someone else needs to step in and help, having everything in one place is invaluable. You don’t want the whole system living in your exhausted brain. Print it. Tape it up. Thank yourself later.
The Feed Supply Bins
Then I have a big container with all of her feed supplies – the connectors, the extenders, the flush syringes, the bags, etcetera. They are packed to the gills.
And I always keep her last g-tube up there with the date I changed it written down because we’ve had g-tube problems before and I never want to be guessing.
There’s one more container in her closet with all the oxygen related stuff . . . pulse oxes, the nose tape things and everything like that.
Watch how I set this all up in my instagram reel.
And Now For Some Honesty
Behind my chair? I just THROW all the extra stuff. Boxes stacked on boxes, right next to our hospital go bag.
Because I don’t have space and I don’t know where else to put it. 🤷♀️
This is not a Pinterest post. This is a real house with a real medically complex kiddo and a system that actually works for us. If your version has a chaos corner too, welcome to the club.
The Most Special Part
Right in the middle of all the medical stuff sits the part I can’t forget . . . the little board with Elle’s name and birth stats, the cross and the things that were by her bedside in the hospital. The things that kept us focused when everything felt impossible.
(Or maybe it’s just God 😘)
Every time I’m measuring meds or washing syringes, I see it. And it reminds me how far she’s come.
If You’re Just Starting This Season
If you take anything from this post, take these three:
- Use vertical storage containers to maximize space and keep everything visible.
- Stockpile enough syringes so you’re only washing them once a week instead of every day.
- Create and print your own medication sheet with doses, schedules, doctor contacts, pharmacy info and any important numbers.
You will figure this out. It won’t look perfect and it doesn’t need to. Some days the system runs like a dream and some days you’re digging through the chaos corner behind the chair.
But remember . . . it’s just a bad day, NOT a bad life.
Medical mamas, what would you add to this list? Drop your best organization or sanity-saving tip in the comments so we can help someone else who’s just starting out. 💙
And don’t forget, you can see the video of all of this on my instagram reel.
Wishing You A Pain Free Day!
