Early on, we could manage all of Casey’s medical supplies in a roller cart. We had drawers on the cart for the different suction or feeding supplies, and then we had the larger items in use. This worked for a few months, and then we would add another roller cart.
After a year, we had an entire wall lined with roller carts all housing different items that we needed to manage Casey’s care. I was thrilled when my husband bought me a label maker and I could label each drawer’s contents and easily find what we needed.
Our home was feeling less like a home and more like a warehouse for medical supplies. We needed all the items, but we had to find a better way to store everything.
We found a modular unit at IKEA that could hold drawers, shelves, lockers, or even bins. We replaced our wall of roller carts with the modular unit, which we could fit in a closet. Then, with the handy label maker, we clearly identified each compartment.
Over the years, we added more closet systems, as well as cabinets and all types of storage around the house. There was not a single room in our house that did not contain some sort of medical supply. We found ways to store them out of site, but still very easily accessible.
We hid diaper supplies and nurse’s notes in the TV console, therapy toys in a locking cabinet that looked like a dresser, and we kept the vest system in the footstool. The IV poles and some of the equipment that was always in use (like the suction machines and feeding pump), were always visible.
By hiding some of the other supplies, we felt like we made our house feel like a home again. If anyone opened one of our closets or cabinets, it would be obvious that we didn’t have linens in that closet, it was full of oxygen tanks (or whatever). But to the naked eye, our home was a home.
Casey’s room was full of pink and purple fairies. Anyone that walked into her room would see a little girl’s room, not a hospital room. When they pulled back the covers, though, they would see a special mattress to help prevent bedsores. When they opened the closet, they would see her bipap and respiratory equipment. Her room was very much a hospital room, but it felt like a little girl’s room.
When you have a child with a lot of medical issues, keeping up with all the supplies can become a lot of work. Some of us like to try as much as we can to hide things from public eyes, and some of us prefer to keep things out and handy. Regardless of how you store it all, keeping it organized is a good idea. You don’t want to be stumbling from drawer to drawer to find something that your child needs quickly.
If you need additional information on medical supplies and equipment, check out the Supplies and Medical Equipment for Children with Disabilities on this website.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.
Giving yourself permission to take the time you need when you are ill can bring about good, healthy outcomes.
Categories: Diagnosis & Health Care
My son is 7-years-old and still drinks from a bottle. We didn’t plan this, and we have tried to work around it. But the bottle gives him the flow control he needs to digest liquids properly.