Four Steps To Manage Supplies and Maintain Your Sanity

When my son, Sam, first got a feeding tube at the age of one, I was overwhelmed. Especially when they dropped off all the supplies. I looked at the boxes filled with extensions, pump bags, syringes, and formula and thought, “Where am I going to put all this stuff?”

Now, eleven years later I laugh at the thought that a feeding pump and related supplies were a lot of stuff. Every year, we accumulate more equipment and all the supplies that go with it. Every year, my reaction is the same. I wonder where I can find room for it all.

I’ve read many books on organizing the home, but let’s be honest, we don’t have typical homes. We run homes that are small medical facilities. Those books only get us so far. As popular as the KonMari Method is, I can’t make it work for medical supplies. The author suggests getting rid of the things in your home that don’t “spark joy.” Urinary catheters and suction machine tubing don’t make me giddy with happiness. But my son does, and all the supplies we have crammed in the corners of our home help him live a good life. They’re not going away anytime soon, and it’s my job to find a system for managing them that keeps my family’s stress to a minimum. We all have enough stress in our lives as it is.

What’s my magic system? I don’t have one. I’ve tried a few approaches, and I’ve made a few mistakes. I have come up with several guiding principles I think about when faced with the challenge of a new equipment arrival. For our home to function and for me not to lose my sanity, the following things need to happen.

1. I have everything needed to care for my son conveniently close by.
2. It is all clean and in working order.
3. I can quickly and easily get replacement supplies.
4. I am prepared for emergencies.

Everything Needed Close By

To have everything you need at your fingertips, you need to determine what you’ve got, where you use it, and which things get used together. For example, we use the nebulizer, including the machine, tubing, meds, and neb kit, two to four times daily, mostly in Sam’s room and at school. His suction machine we use virtually everywhere, and it needs to be charged at least daily. Suction supplies also include tubing, suction catheters of varying types, and Ziploc bags. We use those 10 to 40 times daily. We use Sam’s vest system, which involves the machine, tubing, and a vest, about four times a day, in his bedroom and at school.

I try to store things as close as possible to where I will use them; the things I use most frequently need to be closest at hand. Those things I use virtually everywhere, the suction machine and oxygen tank, go on Sam’s wheelchair. Feeding supplies and medications go in the kitchen, diapering supplies go next to the bed.

I put things that get plugged in on a rolling cart and attached a power strip to the cart with zip ties. Everything plugs in to the power strip. Then, when I move the cart, I just unplug the power strip from the wall and go.

I use bins and boxes in our pantry, in Sam’s closet, and in our basement. I also have another a rolling cart, this one with drawers for smaller supplies (urinary catheters, sterile gloves, tubes of medication, alcohol wipes, sensors for oxygen monitors) in my son’s bedroom, where they will be needed.

Our home health company sends most things once a month. I put small amounts of the things we use regularly in bins and on the carts, and stash the rest in a closet or in the basement. I restock the carts with items from my larger stash twice a week.

Things that we use outside the house pose a bit of a challenge. I admit I have forgotten to pack Sam’s nebulizer mask for school, and on one occasion we were out for a walk and found ourselves with a perfectly full oxygen tank but no nasal cannula. I’ll be easy on myself here and call those learning experiences. We now never ever take anything off the oxygen tank on the back of our son’s chair without immediately replacing it, and we keep backups of everything at school.

I also have a huge backpack that goes everywhere Sam does, and contains virtually everything he could need from diapering supplies and emergency medications to a backup G-tube and oxygen tank wrench. I also keep Allen wrenches for emergency wheelchair repairs in there, among other things too numerous to mention. That’s a lot of extra stuff to carry around, I know, but having extras of most things always comes in handy.

I actually have three extras of most things if I can manage it. One for school, one for the car, and one for the backpack. That can be quite a trick, as insurance never allows us more supplies than they determine we should need in one month. I have purchased some things online, grabbed supplies left in our hospital room, gotten leftovers from families who no longer need them, and picked up things that have been donated to free supply closets. I have even gone so far as to use some things longer than recommended in order to have an extra on hand. If you do that, make sure you keep them extra clean.

Another thing I like to have an abundance of is medications. Our local pharmacy is wonderful, but they are not a 24-hour operation. I once found we were out of one of my son’s seizure medications on a Saturday evening (another learning experience) and had to have a prescription called in to a pharmacy 45 minutes away. Now I try to check prescription medications weekly, to make sure we have everything.

Clean and In Working Order

Of course, all that stuff needs to be washed, sanitized, and replaced every so often. Initially I found it hard to remember to do it all, so I developed a system where things are cleaned on the same day every week, and at the same time every day. After CNAs and nurses became a regular part of our household, I delegated much of the cleaning to them, but I still insist the schedule is followed.

I have a calendar of what gets cleaned, sanitized and replaced on which days. It looks like this:

It also pays to check expiration dates on formula and medications regularly, and to make sure you use the oldest one first if you are lucky enough to have an extra bottle. I check the dates as I’m putting the bottles away and put things that will expire first in front. Then I don’t have to think when I need something. I just grab it.

Quickly and Easily Get Replacement Supplies

I love automatic shipments! Our pharmacy (did I mention I love them!) has put all of Sam’s medications on autofill and even delivers them to my home once a week. I still double check to see we are getting everything on schedule, and every once in a while, there is a glitch in the system, but overall it works great. We also have automatic shipping for diapers.

I am responsible for ordering everything else. Our feeding supply company calls me when an order is due, but I need to remember when to order everything else. I order my supplies on the same day every month. It makes life much easier. Most things come from one company, but we order little things that aren’t covered by insurance from various places. I keep an updated list of those, along with the company’s name and contact information. Then I don’t have to hunt for the information when I need it.

Be Prepared for Emergencies

In an emergency, there is only so much we can control, but I like to plan for the things I can. I’ve already mentioned the backpack and the extra stash of supplies I keep in the car. In an evacuation we would grab the backpack, Sam’s food, bottled water, medications, suction, oxygen, nebulizer, and vest system. Between those items and the supplies already in our car, we could manage for several days.

We have generators for power outages and a whole house surge protector that prevents lightning strikes from destroying his equipment. We have written plans for fires and tornados. We have a special packing list for when we go to the ER or hospital. Things are listed in order of importance, so I don’t have to think about what to throw in a bag after I call the ambulance. And I keep toiletry kits for myself and for Sam pre-packed and ready to go. That way even in an emergency I can keep calm because I know what to do.

In the end, having all those systems and plans in place allows me more time and energy to focus on my family, keeps us all relaxed, and keeps my son much healthier and safer. That’s well worth the investment.

Bridget Rolek is a stay at home mom, primary caregiver, and advocate for her son Sam, who has severe cerebral palsy and Lennox-Gastaut syndrome due to Schizencephaly, Microcephaly and Septo-Optic Dysplasia. A former librarian, she has always been interested in organizing things and is currently working on an e-book about organization strategies for special needs parents to be published in 2019.