The Last Chapter Has Not Been Written

The last chapter

Do you remember picking up a book and becoming so engrossed in it that time slipped away – yet you kept wondering about the end of the story? Finally, because you could stand the suspense no longer, you sneaked a peak at the last page because it was too hard to read the book and not know. You just had to know how the story ended. It was easier to read through the book knowing the ending.

That’s how I feel about this story, except that none of us can read the last page. The last chapter has not been written. There have been so many twists and turns to this story, so many I-can’t-believe-this! turn of events that even medical folks are surprised. I’ll keep turning the pages, reading the next chapter and the next, waiting to see how the plot thickens and turns. We’ll keep praying because there is only one person Who knows the end from the beginning and we have to trust Him to complete the story of Bryce.

The beginning of the story

Bryce is my great-nephew and he turned two yesterday. His family will celebrate, but he won’t be having cake for this birthday. His next birthday? Who knows. That chapter has yet to be written.

September 21, 2019 was a pleasant autumn day. Eighteen-month old Bryce played outside with his siblings while his father was nearby. Nobody knows how it happened, but Bryce fell into a decorative pool and was found unresponsive. He was airlifted fifty miles away to Ruby Memorial Hospital in Morgantown, West Virginia where the fight continued for his life as the next chapter was written.

Bryce’s chances were slim, and doctors did not paint a pretty picture. By morning, Bryce was still alive. That Sunday morning, their congregation prayed individually for each family member and for his doctors and nurses. Across the nation, other churches and families prayed for Bryce, his family, and his medical team.

 

 

 

 

Day followed day as page after page was written in the story of Bryce. Some days were better than others. On happy days, updates were hopeful. On other days, stark words on Bryce’s page reminded others to pray.

Wondering about the last chapter

Initial tests indicated possible paralysis, and blindness. There was a question whether or not Bryce could hear. Indeed, in the first days, his eyes never flinched and he seemed lost in a world of his own. I watched his Grammy (my sister) flick her fingers in front of his face numerous times. He never flinched.

It was quite possible, they said, that Bryce could not live without a ventilator. Day after day, decisions needed to be made by Bryce’s parents and his caregivers. Day after day, family and friends came to stay and offer support. Words weren’t necessary, but their presence said it all. Day after day, line upon line, Bryce’s story continued to be written. Two siblings celebrated birthdays in a room near Bryce’s bed in the hospital. Family and friends provided snacks, beverages, blankets, and a myriad of other supplies as well as comfort as the vigil continued and another chapter was written.

 

As always, there were people who came to stay and to pray. Doctors noticed the care for the family and saw small changes in Bryce. They were puzzled and surprised. Through the course of the weeks Bryce was in the hospital, one of the doctors remarked to his family, “If I were sick, I would want you praying by my bedside.”

 

Decisions – and more decisions

The decision to remove Bryce from the ventilator was made by the team of doctors with his parents. They knew this might mean saying goodbye to Bryce. How does a mother prepare herself to hold her child on her lap for the first time following his drowning, knowing she might soon be saying goodbye?  How does a father, the protector, prepare to say goodbye to his youngest child eighteen months after his birth? By letting God continue to write on the pages of their child’s life, one sentence, one paragraph, one chapter at a time.

God kept sending grace and wisdom when it was needed, and by the end of October, Bryce was able to come home. His care was constant, and he was a fussy child. Basically functioning as a newborn, he has required care around the clock.

One week after his discharge from the hospital,  his aunt posted this on Bryce’s Facebook page:

It’s amazing how much attention one little guy can get. There was a steady flow of visitors at his house today – his aunt, a kind friend to draw his medications, another kind friend to do the laundry, a great-aunt bringing supper, two home health nurses, a medical equipment delivery, a physical therapist, and a social worker – not to mention the UPS man. The little house dog was kept busy greeting everyone and seeing them to the door.

More changes and more chapters

Daily, weekly, there are changes. What does the future hold? What is the rest of Bryce’s story? The story is still being written. This we know: God is faithful.

Because of Bryce’s milk intolerance, his tube feeding needs to be homemade. It includes many ingredients: chicken, chicken broth, avocado, blueberries, bananas, goat milk, green beans, oatmeal, and quinoa. His feedings are given every three hours. The mixture lasts 48 hours, so it must be mixed every 36 hours.

Care for Bryce is time-consuming, but that is a part of his story. Much as we’d like to rewrite the story and put other things on the pages, his story is not ours to write.

He continues to be fussy and it can be wearing to his family and caretakers. One day his youngest sister said, “I wish Bryce would quit fussing!” She no doubt voiced what others were feeling at the time.

 

Specific therapies

Bryce’s doctors referred him for hyperbaric oxygen therapy because it has been shown to help children with neurological problems. While insurance won’t pay for this because his diagnosis does not qualify him for this treatment, he has had forty treatments. This requires a seven-hour round trip drive.

Bryce is also undergoing ABM therapy. This is a re-training of the brain. This training takes place in Philadelphia once a month for several days at a time. Again, Bryce’s siblings miss their mother while she is gone. Yet, that is a part of the story that cannot be unwritten.

Bryce passed a swallowing test a few weeks ago.  He is now allowed to have small amounts of baby food, and tube feedings continue.Tests show that Bryce can see and hear. Today, his eyes focus more than they did a few weeks ago. This past week, he turned himself in his bed for the first time. Bryce is beginning to make purposeful movements, responding to “high five” requests, and pushing his feet intentionally. What will the chapter of this year of his life contain? Nobody knows.

Six months since – and a birthday

Bryce continues to need visits with many people, including neurology, GI, vision, hearing, and physical therapists. His family celebrates his birthday with joy even though there are questions and difficulties each day. For in the difficulties, this they know: God is faithful, and the last chapter has not been written.