Our son Garrett has a mitochondrial dna depletion syndrome, exact gene(s) unidentified. Our oldest child, Addie, probably has it as well. That leaves our gorgeous ball of energy, the middle child, Ainslee, appearing to be untouched by this disease. Follow along and peep through the window at our victories, struggles and lessons learned living with mito.
In many posts I have shared milestones or even inchstones in Garrett's nine years to date, and I have another today! This week, Garrett achieved the very first hole in the knee of a pair of jeans! I say "achieved" because to Grouchy and me, it's just that, a monumental achievement! Most of us with typical kiddos rolled eyes or adjusted budgets when we saw "holy-jeans." It meant another trip to the store or turning them into play-clothes. But not our boy! We may wear these to CHURCH every Sunday until he outgrows them! We are that excited! To us, this means Garrett is finally being rough and tough enough to wear out fabric without outgrowing it first, even. I just had to share!
And then this happened...
We attempted to get a good photo for Christmas cards this year, and we had success, but meanwhile....
I attempt to chime in on Facebook groups and message boards.when I see questions about medical supply organization in attempt to help others skip the 543 revisions I have made to our medical supplies over Garrett's lifetime! My methods aren't perfect, but today, for me, this is working well! If you have suggestions or photos, please share! I have learned so much from other parents willing to share their ideas! Since it isn't only me but also my husband, his sisters, grandparents, and multiple caregivers using his supplies, it is imperative there is a place for each thing and simplicity in the chaos!
In the kitchen to the right of the sink, I have one cabinet I use to hold all medicines and supplements, as well as supplies I use daily in this area of his life.
Top shelf: extra glycerin (appendicostomy flush), a couple of extension sets (feeding tube supplies), tape, and a couple of weekly pill organizers.
Middle shelf: plastic bins labeled for syringes, caps, pill bags, latex gloves and medicine measuring caps.
Bottom shelf: Medicines and supplements, including refills and extras
Taped to the door: Top- ziplock with an extra g-button MiniOne along with syringe and instructions.
Bottom- schedule including meds, appendicostomy flush, g-tube feeds, and bedtime
Below the cabinet I have a very cheap wooden shelf made to go over a sink, and on that I have three plastic bins labeled for his daily meds 8 a.m., noon, and 4 p.m. To the right of those are two tin boxes with chalk paint that I picked up at Michaels craft store using a COUPON!!! One is for tube feeds and one for his appendicostomy flush. Below the shelf I keep his Infinity feeding pump and charger. Then I purchased this adorable wire basket/tray, and I use it to store several cans of his formula, Pediatric Compleat, his thermometer, and a couple other small things I am using long term such as a container of toothpicks for digging out contents of three capsules he needs mixed daily. And then of course there's the sign threatening a $5 charge for whining. (That's intended for ME at six in the morning when I tend to be grumpy while mixing meds ;))
Here's a photo showing the cabinet with the feed and flush and med supplies altogether. I have found that right by the sink is best as it doesn't get hot there but I can easily access very hot water for rinsing tubes and syringes.
If it's possible to have a crush on an inanimate object, here's mine!! These metal bins with chalkboard labels......oh I'm so excited about these! This is the one I have for his g-tube feeds. I keep two 60 mL syringes, as well as his tubing(s), the latest ointment or cream to keep his stoma looking good, and Q-Tips or the generic equivalent for applying the ointment or cream. I place a small washcloth at the bottom of the box and then use another to lay over the contents to keep from getting dusty or having any critters land on it!
Shhhh! Don't tell the feed box, but I have a crush on the flush box also!!! In this I keep a glass measuring cup that's probably more for alcohol beverage measuring but works great for this, a bottle of water, and glycerin...all flush supplies. I keep the catheter and gravity bag in the bathroom on an IV pole and the rest of those supplies in another place I cannot WAIT to share with you!
Today I read a post from a mom whose kiddo just came home from the hospital with a g-tube. She was asking what the favorite, important and essential items are. Well, here are some of mine!!! Pill pouches have revolutionized my life and helped me maintain the remaining few percent of my sanity. I have some pills that break down if they are not out of air and are in a container with other meds, so I can use these tiny baggies to separate them! Best yet, they have a writable area!!!! Measuring caps are also a very vital part of measuring, mixing and drawing into oral syringes. Don't tell anyone, but I just paid over $100 for this type because I could only find them at COSTCO in the box with one of Garrett's supplements, and washing a few out and using for months wasn't working so well. Nevermind my son's closet has a bag with most of the 1,900 I had to purchase at once, but I am so way less stressed knowing I have these little cups with the black writing. They are truly the easiest to use! The clear ones with raised writing did not agree with my eyeballs! 10 mLsyringes with caps are a must as we use six per day but do usually reuse them after washing in hot water. 1 mL syringes are a staple for one supplement he takes twice daily. He takes 0.123 mL of this supplement, and these syringes get us closest. We get them with lids too, of course!
And at the end of the hall I repurposed this school storage shelf when the khaki bins were on sale for $4 at a local store!!! I store cases of formula on the bottom two shelves so it keeps the shelf stable.
At Michaels in the one dollar bins I found these cute little chalkboard signs complete with decorative twine on them! I used a chalk pen to label each bin.
Here are the 10 mL syringe boxes in case you are trying to find a serial number ever!
Pill pouches are at WalMart, 50 of them for $1.50. Last week I cleaned out the supply in Caldwell, Idaho's WalMart. Sorry! These even have some color on them. Gotta try to appreciate the fun where you can!
Oh I forgot to mention my favorite pill crushers. (Shortly, I may reach a place in life where I can admit I am thinking of buying a few more to hoard!!!) What's best is the fact that in the very top of the crusher, there is a compartment where you can store pills if need be! It sometimes has come in handy, and I labeled each compartment. I find these in our small town grocery store. It has raised teeth in the grinding area that beat all the other smooth crushers I have tried.
Garrett recently became continent day and night, so we were able to allow his closet to be for clothes instead of stacks and stacks of diapers, chucks, sheets, wipes and so on. So now we do use half of the bottom of his closet for storing cases of enteral feeding bags...and of course the 1, 878 of the original 1,900 measuring caps! Did I mention how much I love having these??
So there's how we do it...today. It's always subject to change! I do want to mention that I spent very little money intentionally on this organizing project. I had the large shelves and some of the bins. I do spend some cash annually on syringes and caps, but I doubt I will be buying measuring caps for a few months! Sharpie markers are a staple item, and I find that the rolls of medical tape that get down to the last couple feet work well for labeling things. Just today I talked to a medical supply company about ordering pre-printed sticker labels with Garrett's name, my phone number, and 8, noon, or 4, each in a different color, for labeling the sandwich size ziplock baggies where I place his daily doses of meds for each time. Then the pill pouches go inside that sandwich Ziplock. Works for us!
If you have ideas or questions, ask and share!!! I love learning new storage concepts and efficiency steps!
When possible, I have found some peace (and even a tad pleasure) in accessing Garrett's things once I had them looking nice and very organized. Prior to this arrangement, I felt I had some places organized and some not, and nothing was truly in the simplest location. It took many revisions, a scary srip down the stairs with a large shelf, and a couple dives into my favorite crafty stores exercising MASSIVE amounts of self control and restraint to gather some of the items that helped, such as the mesh basket, plastic and metal bins, and the cheap dollar store sink shelf. It also has taken YEARS to find the online medical supply companies that have the exact syringes with caps and the measuring caps.