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.

We brought Nathaniel to the hospital Sunday night. He had shown improvement from the virus I wrote about in my last blog post. When his nurse listened to him a week ago Wednesday evening, she confirmed his lungs sounded better. We maintained his respiratory treatments into the weekend. Each day we saw improvement in strength, reduced coughing, and greater tolerance of feeds. On Saturday, he asked for a banana, something he had not done in awhile, but he also showed signs that the virus was turning into something else. He woke Sunday with spunk and a sparkle in his eye. but as the day wore on he lost both. He spiked a fever. He lost multiple feeds due to coughing and vomiting. Suctioning frequency and oxygen requirement increased hourly. He and we needed help. He was admitted to the Pediatric Intensive Care Unit early Monday morning.

We've had three hospitalizations in four months. Each experience has followed a similar pattern. Nathaniel gets a virus that we manage at home. He experiences a few days of improvement, and then a rapid decline finds him exceeding the parameters we are allowed to treat at home, and we have to seek hospital support. Nathaniel landed in the PICU Monday morning with doctors who specialize in critical care. Having their eyes on his case for a week has been helpful. The high staff to patient ratio and the availability of physicians to evaluate multiple times a day and quickly adjust a treatment plan has allowed a greater understanding of the care Nathaniel requires.

One job - keep Nathaniel's airway clear and hydrate when he is not coughing - has dominated our lives since the day Nathaniel came home.  Before airway surgery, we lived every day in four hour segments. We offered respiratory treatments to manage the aspiration of oral secretions and hydrated by g-tube when his coughing was controlled. Airway surgery eliminated all treatments immediately. Last spring and summer, for the first time, we could be gone from home all day without taking multiple machines. But the new freedom we have taken to have Nathaniel out in the community has brought exposure to viruses, and the subsequent illnesses have thrown us back into a long season where respiratory health directs life. Like reading glasses magnify and allow me to focus on a task close up, our efforts to manage Nathaniel's heath has been so constant, that we have not seen the bigger picture. "That's a lot of work," the Fellow had said. And it broke my heart because despite knowing it to be deeply true, I do not want Nathaniel to ever believe that keeping him alive and keeping him healthy is work.

My friend Jeanne walked in with lunch for the both of us as the respiratory therapist was preparing to start a vest treatment. Nathaniel was resistant. He was signing all done and crying before we even started. I apologized to Jeanne and turned to help the therapist. Nathaniel thrashed and cried his soundless protest. I asked him if something hurt and he nodded yes. He pointed to his waist. Multiple times we evaluated what could be wrong and found nothing. We offered his communication device, and I helped him navigate to the screen of body parts. I asked again, "What hurts, Nathaniel?" He studied the words and pushed them away. He signed "open" instead - a word commonly used when he wants medical equipment taken off.

We could not figure out what hurt him or how to solve the problem. We started the treatment. The vest shook Nathaniel's chest. He cried and twisted and tried to jerk away from us. The communication break down continued. We could not relent to his desire to end the treatment. We could not understand how to support him.

I whispered comforting words into Nathaniel's sweaty head pressed hard against my arm and glanced at Jeanne standing off to the side. Her face reflected pain. Watching Nathaniel's suffering grieved her. It did the same to Nathaniel's grandfather when he visited four hours later just in time for the next respiratory treatment. After observing Nathaniel receive four rounds of a new treatment - a cough assist machine that inflates his lungs and then suddenly withdrawals the air to elicit coughing, Grandpa appealed, "Kim, invent something less barbaric as soon as possible."

And again I realize how limited my vision has become.  I am so close to the machines and the need for them, that I do not see from the vantage point of across the room. I am not removed and distance enough to see the hardship Nathaniel endures. And perhaps I do not want to see. Because to see that parts of Nathaniel's life are very difficult demands accepting that I can not fix his difficult. And that complicates everything I am trying to do to make his life better. I can not create a machine that is less barbaric. I can not end a treatment that his lungs need. I can not always understand his nonverbal cues. I can not navigate to right words so he can express what hurts. I can not be at his bedside every night every time he wakes. I can not stop the endless beeping of monitors that interrupt sleep. I can not change the way needles feel when his port is accessed. I can not prevent his skin from reacting to every dressing they try. I can not... I can not... I can not...

It is a bitter reality. Nathaniel requires so much work.  And yet regardless of how faithful and patient and diligent I am at that work, there is so much I can not do.

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He giveth more grace when the burdens grow greater,
He sendeth more strength when the labors increase;
To added afflictions He addeth His mercy,
To multiplied trials, His multiplied peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.

Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.

His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.

"He Giveth More Grace"
Annie Johnson Flint