Life with VACTERL: Staying One Step Ahead

November 21, 2017 anorectal malformation, bowel management, November 2017 Feature - Urogenital, Urogenital System, VACTERL 0 Comments

When we are researching special needs we usually get the big stuff covered: medical necessities such as surgeries, procedures and therapies. Once we check those boxes we feel we are “good to go” and will figure out the rest on the way. At least that’s how I am!

We have a son diagnosed with VACTERL association. This was not in his adoption file but instead a slew (yes, a slew) of various medical needs that all added up to VACTERL diagnosed by a doctor once we were home. We understood the surgeries and knew how to manage the need but, of course, things come up that make you say, “I never thought about this!”

One of those things for us has been traveling. Anytime we travel, whether it’s overnight for a reunion, a few days at the grandparents’ house or a week for post-op visits, we have to pack “everything plus the kitchen sink”. Now I will say, every child with VACTERL is different and this will look different for each family. For instance, my son has the V, A, C, and R components of the association. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. So a family that has a child with the “T” component might have extra or different supplies to bring on a trip.

Traveling for us looks like this:

Potty Seat – we have forgotten this before and poor kid had to do the “China squat” so he wouldn’t fall into the toilet.

Tray table – most hotels have a mini table that can be moved into the bathroom so sometimes we don’t bring this. It’s very bulky so we try to if we don’t have to. Plus it’s not 100% necessary but it’s nice to have a surface to play on if you’re sitting on the toilet for an hour!

A step stool – if your child’s feet don’t touch the floor then it’s nice to have a stool to rest them on to prevent them from falling asleep. That can be uncomfortable! But we’ve recently started leaving this off the list and finding other ways to prop up his feet. Like a suitcase! 😉

Items of Entertainment – this can be an iPad/tablet, coloring books, puzzles, Legos, etc. It’s just nice to have items that help pass the time instead of staring at a bathroom wall.

Enema bags – along with a wire coat hanger to hang the bag, or Command Damage Free hanger hooks. These can be very helpful to have on hand!

Other items – coude’ catheters, regular catheters, lubricant, ace stopper, Tegaderm adhesives, scissors, syringes, medical tape, diapers, nighttime diapers, swim diapers, saline solution, glycerin, castile soap, “chucks” (or throw away pads) for the bed, diaper rash cream, regular wipes, flushable wipes and air freshener (we have been known to pack some Poo-pourri).

We always carry an extra backpack that serves as a “medical bag” in case we are gone all day long as well as keep extra supplies in our car. I like to advise families to keep an empty water bottle in their car in case you need to cath while driving. (I have crawled in the backseat many of times and helped our son out when there was nowhere to stop and get out.)

While my son and others diagnosed with VACTERL may always have to be thinking one step ahead on managing their need on a daily basis, there is no reason they cannot live life to the fullest! We treat this need as his “normal” and treat his management as just a part of his routine like brushing his teeth or getting dressed.

Sometimes our son will start to feel sorry for himself and see all the extra work everyone goes through. He doesn’t “get” why he was made differently. I choose to tell him everyone is made differently and we just have to “rock” what God gives us!

We are so blessed to be his parents and keep pointing his mind in that direction.

“You made all the delicate, inner parts of my body and knit me together in my mother’s womb.” – Psalm 139:13

– guest post by Stacie: email || Facebook

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