Session 1
I have felt the Lord’s prompting to start this series of blog posts with the intention of providing encouragement to other parents that have recently embraced life with a tracheostomy-dependent child. Our Mayah is also ventilator-dependent. She was also dependent upon a g-tube for many years as well.
We understand the pre-production efforts that go into any travel outing with a medically fragile child, and I hope the Lord can use this series to bring comfort to any anxious hearts.
Our Mayah was in the NICU for six months and that first year after bringing her home, we barely left the house with her. It was a mixture of fear and insecurity. Our very first “travel with our trachie” in March of 2016 was not a success story! When we brought her home from the hospital for the first time, I was a nervous wreck as I sat beside her in the back seat. I could see how uncomfortable she was in the car seat, and my eyes were constantly on her face watching for signs of distress, or on her chest watching for erratic breathing. Within minutes of being in the vehicle, her sats started to drop and we had to hook up the portable oxygen tanks. It was not smooth sailing; nothing at all like the victorious moment I had dreamed it would be.
Our anxiety certainly wasn’t helped by us having to call 911 just hours later. Mayah’s airway plugged on our very first night home from the NICU, causing her to go into respiratory distress. She had never spent any time in the NICU on an HME (heat moisture exchange). I guess that one-hour ride home from the hospital on the travel vent dried up her airway. For our daughter, the HME has never been as effective as having her on the humidified air provided through the heated-wire circuit of her home vent.
This world doesn’t always provide access to electricity, so what were we to do? With all her medical appointments, we had to leave the security of our home, which was equipped to be a make-shift hospital room.
Thankfully, Mayah’s tolerance for the HME has improved over the years and she doesn’t throw many mucus plugs, but those occasional occurrences are enough to keep the mind always operating on high alert. It probably took us longer than most, but eventually, we settled into our new normal and introduced Mayah to the joys of living life.
I look forward to sharing more about our Travels with Our Trachie. And I would love to read comments of your own journeys.
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