Home, Sweet Medical Home

A few years back, I attended a conference focused on issues related to cerebral palsy. One of the break-out sessions that intrigued me most was titled “Establishing a Medical Home”.

Aha, I thought to myself in my total ignorance  endearing naivete.  Finally, some really practical, nitty-gritty, in-the-trenches info that I can put to immediate use. I envisioned the presenter as something of a Martha Stuart Diva of Domesticity crossed with a really great nurse practitioner, with a little bit of a legal/billing expert thrown in.  Someone to tell me how to do all this medical stuff at home.  What to file, what to toss. How to organize the quantities of stuff that go with a complicated child.  I was looking for  a good thing, as Martha would say. Or lots of good things.

I think I even expressed some of this to the Seattle Children’s medical professional sitting next to me.  Bless her, she didn’t even laugh as she explained that a “medical home”really had little to do with my home-making, and everything to do with a centralized place of service for a medically complex patient, particularly important to the pediatric patient as he or she ages out of a children’s hospital setting.

Oh.

Darn it.  I was really looking forward to some great ideas for setting up our home’s medical aspects.  I’ve chatted with lots of other families (both face to face and online) and swapped ideas and problem-solving solutions. I’ve set up various systems myself.  And just recently, I’ve started collecting Pinterest Boards related to accessible homes and yards. Because surely someone knows what they’re doing.  At least more than I do, right?

Even though I’ve never found a perfect template to copy, I’ve learned a lot about some of the components that make for a good system for safe and efficient medical care at home.  So, I’m going out on a limb and sharing our set-up, hoping that it may prove useful if you have similar unusual/atypical/more-unique-than-average needs to accommodate in your household.  Do keep in mind that every situation has its own complexities. My son, though medically involved, is very healthy and has no immune system issues, so our set-up does not address the level of cleanliness some may require. Also, we don’t have younger siblings in the home, so our need to childproof is not as strict as it might be in other circumstances. Please use what ideas are helpful for you, but apply your own knowledge and judgement when setting up your medical home.

All that said — here’s my first reveal of some of our set-up — the Medications and Tube Feeding Nook.  This has evolved over the 12 years of my son’s life.  At various stages, these functions were set up in a kitchen cabinet, on a shelf on his changing table, or in his bedroom in a rolling plastic cart.  Currently we have a nice space in his large bathroom, just off his bedroom, which is an ideal location to store, organize and assemble his medication doses and daily formula bags.

What you’re seeing here:  This is an expedit shelving unit from Ikea.  We added 4 metal cabinet legs (also from Ikea–kitchen cabinet section) to elevate the shelves off the tile floor — key since the bathroom also houses a roll-in shower.  I’ve further hacked the basic expedit unit by placing an extension shelf (left side, second shelf down) into the cubby to provide a work surface. This was a shelf from the as-is section at ikea, and is secured with a couple of L-brackets and screws.

On the very top, we keep big bulky stuff– gallons of distilled water for the c-pap machine, the Costco sized TP packs.  The upper cubby left side holds a week’s worth of formula boxes — the cases of formula are stored under the shelving unit, but I like having a one week supply readily available– it helps me visually track that he’s getting the right amount of formula.

Right side cubby — some key features — it’s handy to have a visible place where the scissors always go. Theft of these scissors is taken very, very seriously. The ever-handy 3-M hook is at work here. Note also, that I label the spot.  Labels are key for organization when you have multiple people doing care-giving tasks.  Also in upper right– stash of dental care items grouped together in an old wipes box. We won’t elaborate about the bowel program products, thankyouverymuch.

This is the work area. With the leg extensions added to the shelves, it’s at a very comfortable height for me.  What you’re seeing: On the left, the extension shelf holds a shallow plastic tray from Target which I use for medication and food assembly (it’s easy to wash spills and dribbles out, and syringes don’t roll away).  I keep the pill splitter and crusher gadgets here, as well as the syringes and measuring cups needed for a day’s routine.  Behind, in the black bin (also a Target find) I store new syringes and adapters, tapes of all sorts, and split gauze packages for stoma care.

On the right, I have two plastic bins, side by side. One for medications, one for ingredients I add to formula when filling a feeding bag.  I can easily slide the bin I’m working with out for easy access to the back.

Below the work surface shelf, I store rarely-needed items.  So a large refill bag of wipes, and collections of like items stored in lidded wipe boxes: saline rinse kits, wound care items, nail care.  On the right is a pull out plastic drawer/bin from Ikea, made to work with the expedit shelves.  A case of pump feeding bags ( a month’s worth) goes here. The cubbies below hold assorted equipment, nebulizer, e-stim machine, parts for the c-pap. On the right I have an additional drawer that holds tube extensions, farrell valves, and spare parts for our feeding pump.

On the wall is a clipboard with print outs from My med schedule.com detailing each medication, the dose, and the time to give it, along with special preparation instructions.  On the reverse of the clipboard is a printed list of all the regularly ordered or purchased items.  I keep that list inside a plastic sleeve, using a dry erase marker to indicate when I’m getting low on something and will need to add it to the next order to our medical supply company.   I also keep a notepad there to jot down questions or concerns to bring up with our doctors at our next regular appointment.  They usually occur to me when I’m getting Daniel ready for bed or doing the morning routine, so this location works for me.

So — there you go.  Our Medical Home: Pharmacy and Food Nook — the way we do it in 2012.  How about you?  Do you have suggestions for set up that make your daily routines easier, safer, more streamlined?  Or do you have vexing little annoyances that you just haven’t overcome?  Do tell.

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