With medical and developmental challenges inevitably comes an assortment of gear. The quantity and variety of this gear spans a fairly wide spectrum, and we've experimented with both ends. In the beginning, we erred toward the side of buying and lugging around everything that might possibly help with some aspect of Collin's daily life. Once we felt ourselves drowning in equipment and other aides, though, we swung toward the other extreme, trying to make due with as little as possible. It only took a couple of times getting caught out in public with no way for Collin to eat to cure us of that.
Now, though we still lean one way or the other, we rest more or less comfortably in the middle. We know what we really need for daily life. At home, we have virtually everything we could need to make Collin's life safe and smooth, even in many emergency situations. Leaving the house, though, is another story.
I always joke that I would win one of those who-has-the-weirdest-thing-in-their-purse contests hands down. I used to carry emergency seizure meds, a bulb syringe, and a miniature pulse-oximeter. I still almost always have a wad of doctors' orders in my wallet. Through trial and error, I have arrived and a useful and doable short-list of items to keep with me at all times.
Here are our non-negotiables - the things it is unacceptable to leave the house without if we're going any further than the end of the street:
- A slip-tip syringe. Sometimes, Collin's g-tube gets pulled out, balloon and all. It's a fact of life for us. If that happens, you can't just stick it back in, because the balloon is still inflated. A slip tip syringe lets you pull all of the water out, place the g-tube, and then refill the balloon.
- Paper tape. Sometimes, Collin's g-tube breaks and comes out. This almost always takes place in the form of a burst balloon. In such a situation, a slip-tip syringe won't help you. All you can do is reinsert the broken g-tube and hold it in place with some paper tape (which is strong but easy on his sensitive skin) until you can get your hands on your backup g-tube.
- Clean gauze. This has multiple uses. Sometimes the g-tube leaks and you need to replace a wet g-tube pad (also known as a button cover). Sometimes you need to use it in the g-tube replacement process. Also, clean gauze plus paper tape makes a great impromptu bandage for a booboo of any size. I keep 2x2" gauze pads with a slit precut to allow you to fit it around a g-tube. You can always tape the slit shut if you need it for another purpose.
- 60 cc syringe and extension. This is how Collin eats. It's how he drinks. The extension hooks to the g-tube and the syringe pushes the food or liquid through the extension. Even if I leave all of his food at home, I have a shot at calculating and pureeing something appropriate on the go. But no matter how much food I have with me, it doesn't help if I don't have a syringe and extension to give it to him.
Even six years in, we're still learning about and tweaking our list of essentials. One thing that helped tremendously was separating our necessities into tiers. First tier stays in my purse. Second tier stays in Collin's backpack. I'll let you take a look inside that next time.