Session 7
After putting in a year of intense on-the-job training, my husband and I had finally settled into our role as caregivers to our medically fragile daughter. We were now professional g-tube button changers, experts at priming her feed through the feeding pump, trach suctioning aficionados, and had joined the pro tour for emergency trach change preparedness. All kidding aside, the trach life had become second nature to us and the packing and planning for excursions was no longer an intimidating experience. We were ready to pop the isolation bubble we had been living in and enjoy some outdoor activities with our trach- and ventilator-dependent daughter, despite the challenges her equipment presented.
Summertime in our rural area includes ample opportunities for weekend fun. All our little surrounding towns have their own summer picnic. If you made it to each of them, you could have each weekend booked all summer long! Well, we didn’t make it to all of them, but we did introduce our girl to life in Mercer County, Ohio. She made it to a few softball tournaments for her daddy’s league, a drive-in movie, the fair, some parks, and even a wedding.
We spent a lot of time outdoors that summer and our girl loved it, especially scooting around the patio in her new walker! (Joovy Spoon baby walker is what worked for our daughter with dwarfism.) Regulating her body temperature was a struggle, so we made sure to limit her time in the sun and utilized a clip-on fan to help make her comfortable.
But the real adventure of the summer was taking our daughter on her first trip to the ocean. Packing for a week-long trip was serious business! We made sure her DME (equipment/supply company) was aware of our travel plans, and they found a company near our rental that could help in case of an emergency supply request. We also researched area hospitals to see which had a PICU equipped to handle our daughter’s care. There was also the task of packing the contents of her room to bring on vacation. Organization was the key! I labeled each box with a number and had a corresponding spreadsheet to accompany that box that listed its contents and quantity. We utilized our inverter in the vehicle to keep the ventilator battery charged and to plug in the humidification unit to ensure her airway didn’t dry out during our long days of travel. With our extensive checklist complete, we headed to Hilton Head Island for our first vacation as an entire family!
Our trip was a success! She hated the beach (or rather the sand), but she loved the pool. Water and tracheostomy tubes do not play well together, so vigilance was necessary! We practiced extreme caution, but we were thrilled to introduce our daughter to new experiences. It might not have been a carefree vacation, in fact, it was just the opposite. There were even more things to worry about being in a new environment, like the changes in humidity causing us to administer more breathing treatments, but when are vacations with young children ever stress-free? Not in our family anyways!
We made beautiful memories and captured dozens of photos of our family. It was picture perfect for this mommy! That summer, we logged many miles traveling with our trachie!
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