Another Chapter About Bryce – and HBOT

God is writing Bryce’s story – with HBOT

Bryce has an HBOT machine in his home, and life is settling into a new normal. He’s travelled many miles by car, RV, and air to get help for his diagnosis. His family includes Bryce in their normal (and not so normal) family life and schedules.

One afternoon, my sister asked Elissa, “Are you taking Bryce with you tonight?” Elissa smiled and replied, “You don’t want to see it and you don’t want to know.” 

I heard the conversation, and I smiled. I knew what this meant.

The diagnosis

That is because Bryce has spastic quadriplegic cerebral palsy, and his family does not exclude him from activities. Bryce’s family was going to a birthday party that included roller skating. Guess who would be roller skating in the arms of one of his parents?!¹

Bryce is four-and-a-half-years old, and his diagnosis is the result of a drowning that occurred at his home in September, 2019. He was playing with a boat in a decorative garden pond. No one saw what happened, but Bryce was found face down in the water. I wrote about Bryce two years ago, and you can read that blog post here.

This is another chapter in the story of Bryce and his family. We don’t know what happens next, because the last chapter has not been written. We only know what is happening now in this chapter.

Quadriplegia is the most severe form of cerebral palsy because it affects so many areas of the body. Bryce has exceeded expectations of medical personnel and surprised many of his caregivers.

I think there are two reasons for this:

• God said “yes” to many prayers.
• the care he receives from his family, caregivers, and those who provide therapy. 

First months

Initially when he arrived home after five-and-one-half weeks in the hospital, Bryce wanted only his mama or his daddy. The next months were difficult for everyone. So many questions, so few answers, and so much change in their world.

Over time, Bryce learned to know many different caregivers. It was a strenuous time, for Bryce was happiest only when one of his parents was with him. He was fussy and demanding in his own way. He did not sleep through the night and he cried during the day.

Like a lost little boy, he floundered and fussed, trying to find his way out of the maze following his accident. None of us can understand the turmoil this family faced as they grappled with unknowns and adjustments. God knew, and He was there.

Doctors were unsure how much damage was done from the drowning. He was possibly blind; he might not be able to move or respond to stimuli. Bryce has defied his prognosis. Is he completely well? No, but one day he will be, when the last chapter is written.

Strangers and babysitters

For this chapter, there are some things we can ascertain. Bryce knows what is happening in his world. He knows when someone new is in the house, for his face shows quiet perplexity. I think he is trying to figure out if that person is “safe”. 

I don’t live in Bryce’s community, so I only get to visit several times a year. When I visit, Bryce’s face shows puzzlement. He becomes quiet, trying to figure out from where this new voice is coming. His body is still but he cocks his head, listening, trying to figure out who this new presence is. I have watched the look of bewilderment cross his face when I enter the house, even if he is not in the same room. He knows someone “strange” is there. 

Bryce recognizes my voice because I sound like my sisters (one of his caregivers and his grammy). Yet he knows I’m not one of them. When I sing songs with him, he smiles, for he recognizes the rhymes I sing or say with him when I visit. He is content with me for a while, but always he cranes his neck, trying to find someone he truly knows. It’s like he’s pulling petals from a daisy in his mind, “I know her? I know her not. Know her? Know her not.” 

No one like mom

As Bryce adapted to home following his return from the hospital, his siblings took turns caring for him while his mom was busy with household duties. As long as Bryce thought she wasn’t home, he was fine with a sibling providing entertainment. Bryce learned if they called “Mom!”, she was home. Then he craned his neck and whimpered, searching for mom.

The kids started calling for her by spelling, “M-O-M!”  Then Bryce figured out that M-O-M means mom is home. So they started using other words, changing them from day to day so Bryce did not catch on.

“Person in the kitchen!” Blake called one day when he was tired of entertaining Bryce and wanted to go play. “Are you still busy?”

Music and stories

Bryce does not talk, but his sounds let others know what he wants. According to his Aunt Christi, he has “complaining and whining voices.” His mom can usually interpret what his whine or cry means.  Bryce’s body and facial expressions show excitement. Bryce loves music. Sometimes he “sings” along. He enjoys silly songs, children’s songs, and even hymns by his caregivers and family. He likes to be with daddy when Ben listens to the Amos Raber family, and he loves listening to Randy Travis or other voices who sound like Randy. Why? Nobody knows. 

Bryce loves stories as well as songs. One of his favorite activities is Going on a Lion Hunt. When Aunt Christi² asks him if he wants to go on a Lion Hunt, his face lights up. He wiggles his entire body, arches his back and gets so stiff it’s hard to hold him. Bryce is all smiles as he anticipates every move of the lion hunt – from the stealthy parts to the scary parts. He also enjoys Dora the explorer and other songs with repetitions. 

Therapists 

Bryce has many therapists, teachers, and medical personnel who provide help. He traveled with his family to Texas for specialized treatment under a doctor. He spent several weeks in northern Virginia for other treatments. Until the end of the summer, his mom took him to ABM therapy in D.C.  Now Miss Collette, his therapist, visits Bryce in his home in western Maryland once a month for two days to do ABM therapy with him.   

Bryce goes to school one day a week. He’s not part of any class, but has a class all his own. There are five therapists from the public-school system who meet with him over that time, sometimes working two at a time with him. During those two hours, he has OT, PT, speech, vision, and Special Ed.

Feeding

Bryce is able to take some bites of baby food, but he cannot eat enough to sustain him. That is why he still has a G-tube for feeding. His parents are using a variety of nutritional supplements that go into his G-tube with his food. Preparing all the supplements to add to his feedings requires a lot of time. Each capsule must be opened and the powder dumped into appropriate containers. Some of the medication must be crushed before it is added.

Elissa’s aunts take care of this responsibility and work together one evening every two to three weeks to get the supplements ready for Bryce. I’ve been there a few times and helped open capsules and dump powder into the right containers.    

HBOT Chamber

One of the treatments that provided the most improvement is the Hyperbaric Oxygen Chamber (HBOT). Bryce received these treatments in other places which, of course, involved being away from home for mom and Bryce, a round trip travel of eight hours. So, his parents decided to purchase one to use at home. Bringing an HBOT chamber into their home provided easier access, no travel for mom to be away from her other children, and more times for Bryce to spend in the chamber. This HBOT chamber in his home is another part of this chapter of his life.

This is what I can tell you about Hyperbaric Oxygen Therapy (HBOT): “The air we breathe is 21% oxygen. Our body’s tissues need oxygen to function. HBOT involves breathing 100% (pure) oxygen while in a special space called a hyperbaric chamber. The air pressure inside is raised to a level that is higher than normal air pressure. The increased air pressure in the chamber helps the lungs collect more oxygen. Getting more oxygen to the tissues that need it can help the body heal and fight certain infections.³

Bryce does not like to be in the chamber by himself. It is a sixty to ninety minute process, and each time in the chamber is considered “a dive.” When Bryce went away for HBOT, he did 40 dives (approximately eight to ten per week) and then they took a break. Since he is doing his dives at home, the break looks different. He does not do a dive every day but they take a break after he’s done around 40 dives.

Church and fun

Is Bryce improving? Yes. Sometimes the changes are small and seem inconsequential, especially for those who care for him daily. While Bryce’s eyes do not seem to focus, he gazes for longer periods of time at people and things. He now “sings along” when  he is relaxed. Bryce no longer needs someone to be present with him at all times. He is content to hear the sounds of his family from the next room.

Bryce knows his world. He knows his family and those who love him.

Bryce loves church and Sunday school. Before Sunday school, all the children meet and sing some songs together. The last song they sing before they disperse for class is “Into my Class.”⁴ When this song is sung, Bryce gets so excited it is hard to hold him. He kicks, laughs, and makes his happy sounds. Bryce knows his name and waits expectantly to hear it, even in Sunday school where his mom is now his teacher.  He is an active part of his class and is loved by the eight to ten classmates [ages 3-5].

There are two little girls who fight to get to sit beside him; they help him color and pay attention to him. Sometimes they share their offering money with him if his mom is busy and doesn’t give him money for the offering. One of Bryce’s favorite parts of Sunday School is saying the verse, taught to him by his mom at home. Bryce beams when the class says the verse together. When Bryce hears the ministers in church pray for him, he is all smiles. Yes, Bryce knows his world.

Bryce enjoys listening to Odyssey tapes with Alicen, his 15-year-old sister. He likes to listen to Spotify and other CDs when he’s hanging out with his daddy. He enjoys watching Avary play next to him. For Avary, the way Bryce is is the way she has always known him, for she was not quite four when the accident occurred.

Fun with brothers

The brothers play with Bryce, taking him on “airplane rides”, and pushing him outside in his stroller. Benson swoops him up in his arms and “plays football” with Bryce, lowering him quickly for a “touchdown.” Bryce squeals with delight and begs for more, thrashing his arms as if to say, “Do it again!” One of his favorite things to do is ride the four-wheeler with his daddy.

I confess I have had to turn my face away from the antics because it’s easier to not watch when Bryce comes in for a touchdown. While those of us who are his great-aunts shudder at the antics of his siblings, we recognize that Bryce needs to be treated like a normal child. Why should he be deprived of fun and games with those he loves? What would be the purpose of protecting him from every bump along the road?

This is why Elissa told her aunt, “You don’t want to see and you don’t want to know.” For Ben and Elissa, Bryce’s parents, their goal is to give him the best life he can experience, filled with love, care, and fun.

Let’s not forget the fun! Laughter is a medicine. Laughter is good, not just for his family, but for Bryce. It is part of his healing, and we must not forget this medicine, which will be present in every chapter of his life.

Thanksgiving 

As each chapter is written, we can look back and see the goodness of God. Bryce sleeps through the night more often than not. The HBOT is making a difference. Therapists are helping his recovery. Caregivers who dote on Bryce provide love and care. Laughter is good for the soul and for the healing of Bryce.

The family continues to adapt and adjust to this new way of life. The upheaval of the earlier years is behind them, but sacrifices continue daily. There will never be a stalemate, for they persist in researching and learning. The smallest milestones are celebrated, and this family allows the frustrations to shape their character. 

Elissa recognizes that the support of family, friends, church and community has been pivotal in their journey. Without the support of others, this trek would so much more difficult. Bryce has two different caregivers for a total of twenty-eight hours a week. A cousin is hired to come in one day a week to do laundry and some housework. Since bringing the HBOT machine into the home, life is more settled, and Bryce is calmer. He is happier and more content to be by himself while his siblings or parents are doing other things in the house. Is it because of the HBOT machine or is it because life is more settled? Possibly it is both.  

and praise

Bryce has two older brothers. They enjoy playing together, but their interests are different. Benson loves being outside, playing in the woods. Blake would rather shoot hoops or do other things than play in the woods. Daily, Benson prayed that he would be able to play with Bryce in the woods. A few weeks ago, Benson took Bryce for a walk in the woods. Bryce, strapped into his stroller, was content and happy. Later that evening, his mother reminded Benson of his daily prayer.

“I know,” Benson said. “I’ve already thought about that and I told Bryce about it.” 

Several weeks ago in a family discussion about Bryce, one of the siblings said, “I like Bryce just the way he is.”

At this Thanksgiving season, the Riegsecker family is grateful for the joy they have found in this difficult journey.

Would they wish to go back and redo the events of that day? Certainly.

Would they choose to have their blond-haired, blue-eyed boy healthy and well? Of course.

Do his siblings wish he could run and play with them? For sure.

This is not a path any of them wished for or would have chosen, but it is part of Bryce’s story. Thus, it becomes their story as well.

But God . . . .

God is good, and for His grace and His goodness, we are grateful. God gave them this journey, and in each chapter, they – with Bryce – are traveling it well. 

Footnotes and Video links

¹ Unfortunately, the rules at the skating rink prohibited Bryce skating with his parents that evening.

² Christi Orendorf is Bryce’s aunt extraordinaire (his mother’s sister). She is a caregiver, babysitter, chauffeur, and anything else necessary for the Riegsecker family. Special credit and thanks to Christi for the information she shared with me and for proofing this story to make sure my facts were accurate before I showed it to Elissa. 

³ Another verse to this song is “Come into my class, Lord Jesus”. This song has been a part of the church community since I can remember. I couldn’t find the second verse online, but this YouTube presentation is the same tune as the one Bryce knows and the only words that are different are  “class” instead of “heart”. You can click here to hear this song.

⁴ Source: https://www.fda.gov/consumers/consumer-updates/hyperbaric-oxygen-therapy-get-facts

Videos

If you want to see some videos of Bryce, click on the links below. I will delete negative remarks about the contents of the videos. 

Videos 1 & 2 recorded by Christi. Videos 3 & 4 recorded by Bryce’s family.

Aunt Christi sings You Are My Sunshine, click here.

Aunt Christi and Bryce “sing” Old McDonald Had a Farm, click here.

Bryce with Benson in the woods, click here. [” . . . Toasty, toasty, toast.  . . . – . . . . . yeah, a video of Bryce.  Ah! {stroller turns sideways} Benson Joel! At least he was buckled; that could have been bad. . . . At least I had – I got that on video!  {laughing} Mom will not be happy when she sees this video {laughter}  . . . “]

Bryce with Benson in the house, riding a “horse”, click here.