All in Airway and Respiratory

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.

When Medical Conditions Influence Educational Decisions

"Why don't you homeschool Nathaniel?" The question was the first thing my mom asked when I answered the phone early Tuesday morning. It was asked last Saturday by a college friend, who has close to thirty years experience in public school special education, after she read my blog post about a Christian school's denial to consider enrolling my son. It is a question Rich and I have repeatedly asked ourselves, and it is a logical one given that homeschooling has been our educational choice for our other children.  Answering the question and making any educational decision on Nathaniel's behalf forces us to reflect on his journey.

When placed in our home through foster care, Nathaniel was enrolled in early intervention services offered through our state Department of Education. We have homeschooled for twenty-five years. Our experience with public education was limited to our older two sons who attended while living at their mother's home. Despite the unfamiliarity, we continued the services. The intervention model identified the child’s greatest need and offered one therapist to address concerns. Nathaniel was assigned an occupational therapist. We loved her. However, together we quickly realized that Nathaniel had more needs than she could meet in an hour a week.  Speech and physical therapy were added. Nathaniel’s experience with early intervention speech therapy has been documented here. Not soon after we began sessions, we stopped them. We sought private speech therapy to tackle what we knew would be long-term communication needs.