As caregivers of children with special needs, we all have products that have made our lives just a little bit more manageable. We save lists and bookmark pages online, and when the opportunity arises to share our favorites with others, we do so freely because we know that managing the logistics of caregiving is no easy task. And because we know that the language of “favorites” or “must-haves” is a two-way street; in sharing ours, we often receive a few in return.
In this spirit, I’ve compiled a list of some of my favorite products. Some of these are related to Gus’s specific medical complications, but others can be appreciated by all.
FreeArm Muscle: If tube feeds are part of your life, a FreeArm Muscle should be part of it, too! The FreeArm gives you an extra hand wherever you are — at home, the hospital, in the car… It can clamp to a table, stroller, crib, wagon, or just about anything you can think of, and it detaches and bends to fit into your bag. You can use it for gravity feeds or pump infusions.
A good place to snuggle: when you’re the parent of a medically complex child, you need a go-to comfortable space. I suggest you invest in a high-quality piece of furniture, somewhere quiet you can go to connect with your little one.
A raised bed: to create more space for storage (and to save your back), I recommend a raised bed. Places to organize and store medical supplies are vital; sometimes you just have to be a little creative to find the space.
A bin storage system: it’s important to put together a storage system with content visibility. This modular system gives you that, allowing you to organize supplies easily and transparently.
Spice-rack for meds: this one doubles as a sort of hack. I use a spice-rack organizer to store prepped medication syringes so they’re accessible, easy to reach, and easy to read.
Cooler-insulated lunchbox: When Gus was little, I put his tube feeds and pump in a cooler-insulated lunchbox like this one. As he got older, we found these Pottery Barn backpacks that come in a mini size for him to wear while infusing.
Adhesive remove spray: I literally can’t live without this; it’s magic in a can. Not only do these sprays completely remove adhesive (it just melts away), there is no residue. That’s a big deal when you’re trying to put another ostomy wafer back on the same skin. In addition to Hollister, Coloplast also makes a good product.
Ostomy belt: if your child has an ostomy, the simplest way to increase their wear-time is an ostomy belt. You can order them from wherever you get your ostomy supplies. Every major company makes a belt for their pouches, including Hollister (who also makes a pediatric version), Convatec, and Coloplast.
Large washable bed pads: You can typically get these from the company you get your ostomy, wound care, or enteral supplies from. If you can’t access them that way, you can find them in various sizes on Amazon. I like the 34” x 52” size so I can tuck it in on the sides of the bed to keep it in place.
Parafilm: This is great for protecting the connections on your TPN tubing against accidents. I wrap every connection point (line to curly tubing, curly tubing to pump tubing, extension tubing if you are using it) to prevent the fluids from any accidents from getting into the thread of the connections. You can ask your infusion company to provide this for you.
For boys - external caths: If your son gets TPN overnight and struggles to stay dry, these may change your life! We’ve been using them for about nine years now. No more changing diapers or wet clothes, or washing endless wet bed pads in the middle of the night. Being able to sleep is a wonderful thing!
Your supply company should be able to provide these for you. They come in various sizes, so call Coloplast to ask for a measuring guide and samples (800-533-0464). They also come in 2 lengths:
You'll need a collection bag to connect to the catheter as well. Most likely, your supply company will send you a generic collection bag. We use a 2L bag. Once you get over the learning curve, the catheters are amazing! You can use a barrier wipe if he has skin sensitivity and then an adhesive remover wipe to take the catheter off.
What Are Your Favorite Products?What must-have products have you collected through the years? Let’s continue the chain of sharing and support on our Facebook or Instagram page. We also hope you consider adding our Central Line Vest, G-Tube Wrap, Ostomy Pouch Cover, and Line Covers to your list of favorite products.