Welcome to my blog. I write about life as a Christian wife, mother of eight children, and grandmother.
Enjoy.
PrAACtical AAC, a popular blog for speech therapists working in augmented communication, shared a post this morning that hit me hard. "No matter what the age or type of disability," it said, "almost all AAC learners face the challenge of communicating effectively during encounters with healthcare professionals. People with AAC needs are among those who are considered to be communication vulnerable and do best when there are planned supports in place."
Communication vulnerable.
I had hoped to post some photos for Nathaniel's third birthday last week, but a sudden hospitalization reorganized all plans. He had a runny nose and sneezes on Friday, November 21st, and I assumed it was a virus. Nathaniel has had a handful of viruses that come and go like they do for most children. He woke up coughing Friday night and threw up. The night nurse needed to put him on oxygen - often our first indicator that he aspirated.
Three years ago tonight another woman held Nathaniel warm and secure in her body sheltered from the encroaching world. I don't know when her labor pains started or who drove her to the hospital. I don't know how many needle sticks it took to start her IV or what type of pain reliever she had. I do know that three years ago tomorrow morning, the doctors delivered a baby boy from her womb and she heard no cry.
The larynx does a number of things for the human body. Its most important role is providing a passageway for breathing. Second and almost equal in importance, the larynx protects. The coordination of nerves, muscles, and cartilage work together to prevent foreign objects, including spit, from entering the lungs. We are all familiar with this process. Something starts to go down "the wrong pipe" and we cough it out. That is your larynx doing its job. Another function of the larynx is to produce sound or our audible voice. A fourth function is to help move food and drink toward our esophagus and stomach. Four things: breathing passageway, protection, sound production, and aid in the eating process. We learned last week that having all four is not an attainable goal for Nathaniel.
I shared the news of Nathaniel aspirating with Rich by sending him the photo of the green gunk on Nathaniel's shirt. I had no words to soften the message. He had only one word back. "Sad."
I left the clinic and got on the elevator. There was a doctor in a white coat already there. Nathaniel burst into tears, started to kick his legs aggressively while turning in the stroller to reach me. This is his often response to seeing anyone in a white coat. Especially moments after an invasive painful test. The doctor moved to the far corner of the elevator away from us. "I am not going to hurt you," he said to Nathaniel. "I won't even look at you." He turned his back to us, his face to the corner, and remained quiet for the ride three floors down. It was what Nathaniel and I needed. It was perceptive and kind on the doctor's part. It was a gift from God. God has continued to meet me moment by moment since yesterday's test.
If fact He prepared me Sunday morning for discouraging news this week.
I am thankful that a picture is worth a thousand words. It means I do not need to write much; the photo above says it all. A nurse and I held Nathaniel down so a doctor could put a camera up Nathaniel's nose and down his throat while a speech therapist force fed him green dyed apple juice. He coughed green dyed secretions out of his trach tube for an hour afterwards.
He is still aspirating.
