Welcome to my blog. I write about life as a Christian wife, mother of eight children, and grandmother.
Enjoy.
All in Lessons I've Learned
It was during the second session of developmental language group that I realized another layer of complexity because of Nathaniel's inability to produce any audible noise with this vocal cords.
He can not scream to protect himself from others or get help.
We share a middle name. I did not expect that. Nor I did expect how quick and unannounced grandmother tears come. They showed up first in the shower the morning I knew my daughter was in labor and again standing by the sink in her kitchen a dozen hours later as my husband washed birth off his granddaughter's head.
"Can Dad wash her hair before you leave?" our daughter asked. She has watched her daddy bathe babies for two and a half decades. While she closed her eyes and rested deep on her pillow, her father showed her husband how to wash a little girl's hair. And I wiped tears.
After Nathaniel's Laryngotracheal Separation in February, our Cincinnati ENT told us that Nathaniel's new breathing stoma was big enough that we could stand across the room, throw the trach tube, and get it in. We all laughed. That is an impossibility of course, but we now know that with Nathaniel in the back seat, a six foot one inch lanky Daddy can get the tube in from the front seat.
A few people have asked me why Nathaniel's airway is safer - how did surgery provide that? Before we got home, Rich and I had started discussing what was different from previous accidents. There were multiple things working together.
I came home from the hospital last night and noticed the two trachesotomy tubes sitting on my windowsill. Both, one from two weeks ago and one from Friday night, are waiting to be cleaned and sterilized. Seeing them reminded me of the first time my younger brother came to visit us after Nathaniel came home. We keep two trachs, one the same size and one smaller sealed in bags after sterilization, near Nathaniel's bed. At the time of Clint's visit, one of the tubes was stored in a bio-hazard bag; it had probably last been sterilized at the hospital. Bio-hazard baggies are what the nurses use even though the item inside is going home intended to be reused. When talking about Nathaniel that night with my brother, I made a dismissive comment about the intensity of his care. "You have a bio-hazard bag hanging in your son's bedroom," Clint said with some strong emotion. "For crying out loud, this is beyond medically complex. This is life and death."
I have about an hour. I have been wanting to get an update posted to the blog for weeks and have not taken the time. I am going to take this hour and publish whatever comes at the end of it.
Here goes - ignore spelling and other such errors.
Rich and I left Cincinnati knowing airway surgery would change Nathaniel's life. And ours. We were right. We did not know about all the different ways that would happen. In general, everything about living on the edge of life and death is gone. We no longer mentally ask ourselves the thousand safety checks we used to ask: "Are his hands too close to his trach?" or "Who has eyes on Nathaniel?" or "Did he aspirate when he vomited just now?" Life has been taken down a level in intensity. We change trach ties alone now; Nathaniel's three-year old restlessness with this process and grabby hands at his tube will no longer means a potential oxygen deprivation accident. We drive alone with him. We have left him with his older brothers to run to the doughnut shop on Saturday mornings. He plays free with other children and away from our side on the church playground after services. On Thursday, I was in Houston at the conference, Rich was at work, and Nathaniel was home for eleven hours with a nurse who had worked only one shift prior. Quality of life, getting on with life, enjoying life moments.
Another way that life has changed is that Nathaniel has had more respiratory illnesses in the couple months since surgery than he did in the six months prior. We knew this would happen. The freedom to live life means we are in contact with more people and more viruses. He has jumped from one illness to another; most have stayed very minor, however one lingered long enough that it developed into a secondary tracheitis infection. But he has not been hospitalized. Airway surgery removed aspiration. Without aspiration, less pneumonia. Even with the increased viruses, we are using fewer breathing treatments, and Nathaniel requires less suctioning than prior to airway surgery.
I was driving home from grocery store the other night and started to sob. A chest heaving, can not catch your breath sort of sob. Nothing had happened that day or during the shopping trip that warranted tears. As I was leaving the store, Rich and I had exchanged texts. He and Peter were finishing up changing Nathaniel's tracheostomy ties and he was putting Nathaniel to bed. "Will you be home to say goodnight?" The last text from Rich that I read before the convulsive gasps gripped my torso like fingers grip a steering wheel when driving in a torrential rain.
