Trach Care in Cowboy Country: Five Medical Items We Are Glad We Brought
The last seven years have taken us deep into the world of complex medical and special needs parenting. Meanwhile, our son who is a cowboy has worked seasonal ranch work in New Mexico, a couple years including sub zero winters in Montana, broke and trained colts in Wyoming, and returned to cowboy again New Mexico. We’ve visited him less than a handful of times, typically just one parent at a time, because tracheostomy and cowboy worlds are distanced by more than miles.
Guest Post: A Modern Easter Story
Recently one of our older children text late at night and asked if I had time to answer five very specific questions. I did. He called, and I answered the questions quickly. And then I asked, “Are you doing some kind of writing?” Having been his home school teacher, I recognized research mode. He shared that he was writing about what the resurrection of Jesus Christ means to him. The questions were focused on Nathaniel, and I curiously asked if he would share his work with me. And then I asked permission to share it with the world.
Five Things I Have Learned Transitioning My Son from G-Tube to Oral Feeding
I typically use Nathaniel's quarterly GI appointment as a reason to write about his progress transitioning from g-tube to oral feeding. I skipped writing about April's appointment because there was nothing spectacular to share. Nathaniel's extended PICU at the end of February required us to return to full g-tube feeds. He lost two pounds while sick and had no desire to eat orally when discharged. I write a bit about that recovery here.
I probably should have written about feeding through that season. The ebb and flow between success with oral feeding and relying on the g-tube has been very much a part of the transition.
When Life Demands Persistence
Nathaniel is back to baseline.
He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.
But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.
He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him play in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.
At the End of a Week in Pediatric Intensive Care
During rounds this morning the team discussed how to adjust and increase feeds around respiratory treatments, coughing, and vomiting. I explained what I do at home. The Fellow commented almost under his breath, "That is a lot of work," and immediately I started to sob. In the middle of the hall, in the middle of rounds, in front of a team of professionals and strangers, I lost it. And I could not pull it back together.
I barely could whisper a response between breaths, "Yes, Nathaniel is a lot of work."
The team paused to give me time. All I could do was cry.
Post-It Note Parenting
I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"
"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.
From under his pillow the alarm on Rich's cellphone went off. Five forty-five am. The shoulder I was using as a pillow moved, and then was gone.
Theories I Have Learned: Our Journey In Tube and Oral Feeding
"Do you hold him every time he receives a g-tube feed like breastfeeding an infant?" asked my friend, Kelly three months after we brought Nathaniel home.
Her question awakened a maternal instinct I had known five other times, but had not applied to Nathaniel. No, I thought to myself, but was hesitant to admit. Feeding Nathaniel involved a plastic button inserted through a hole into his stomach, a whirling pump hung on an IV pole, and a short tube connecting the two which delivered warmed formula at regular intervals. Feeding Nathaniel was dictated by a doctor; it was supervised and charted by a home health nurse. Feeding Nathaniel was a medical treatment.
At the time, Nathaniel was eleven months old. We had made the decision to feed Nathaniel in a high chair at a family meal as often as his feeding schedule allowed. Other feeds were usually given in his crib. Hours after Kelly's question, I settled into a rocking chair in his room and held him for the duration of his hour and a half g-tube feed; a mother's nurture and intuition was added to Nathaniel's feeding plan.
Camping with a Tracheostomy
When I googled "camping with a tracheostomy" last week, I mostly found short lists of summer camps that accept medically complex children. A few forums suggested using an RV for traveling and camping experiences with a trach kiddo. We rented a large RV in 2008 and took five children to the Devil's Tower, Badlands, Mount Rushmore, Yellowstone, and the Grand Tetons. I can easily imagine how convenient it would be to "RV camp" with Nathaniel. Except we do not own an RV; we own a tent.