Life with AFM: Braden’s Story

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On July 4, 2016, my 5-year-old son, Braden, threw up when he tried to eat a chip. He’d had a cold the week before – all my kids had – but, other than that, he was a perfectly healthy kid.

As the day went on, he got weaker. We had to carry him to watch the fireworks. He didn’t want to swim and slept through dinner.

The next day was worse.

Eventually, I took him to an urgent care facility in our area where they pumped him up with fluids, antibiotics and steroids. We went home but later that day, we were back. He was continuing to deteriorate.

We were admitted to our small, local hospital and Braden spent the next few days there. Braden kept getting weaker and weaker and moving less and less. On July 9, he stopped breathing. He was intubated and brought by Memorial Hermann Life Flight® to Children’s Memorial Hermann Hospital. After a few days of no improvement, he was diagnosed with acute flaccid myelitis (AFM), a polio-like syndrome that causes paralysis in children. Our perfectly healthy boy was paralyzed. He could move his left hand a little, but that was it.

We spent two months at Children’s Memorial Hermann Hospital before Braden was transferred to a rehab facility in Dallas, which was equipped to care for kids with tracheostomy tubes and ventilators. Braden couldn’t do anything. He couldn’t swallow, breathe, sit or hold up his head.

He spent almost six months in Dallas while his siblings were home in Beaumont. During this time, Braden did intense therapy and fought every day to regain any strength that he could.

When we came home after seven-and-a-half months, he had 24/7 nursing care at home due to his inability to breathe or eat independently. He relied on caregivers for everything. He couldn’t dress himself or use the bathroom by himself. We worked hard at rehab at home. We kept him as active as we could, encouraging him to use his arms, blow bubbles and spend time standing.

We’ve pursued some unconventional rehabilitation options as well. A surgeon in Los Angeles transferred a strong, functioning nerve from his wrist to his hand to hopefully give him the opportunity to close his hand in the future. A professor at Texas Christian University built him a robotic arm that picks up his tiny bicep signals and helps to move his arm. We spent six weeks in Baltimore in an intense rehab program that specifically treats kids with AFM.

We moved to The Woodlands almost a year ago and have been so fortunate to receive outpatient rehabilitation therapy  at TIRR Memorial Hermann-The Woodlands Medical Center. Every week, Braden gets occupational, physical and speech therapy. His occupational therapist works diligently with him to strengthen his paralyzed right arm.

In physical therapy, they work on regaining muscle strength in his neck and core. Speech therapy focuses on helping Braden relearn how to swallow and breathe.

We can’t put a value on the therapy he’s receiving. Every week, his therapists are committed to helping him regain his strength. It’s a slow, slow recovery and we have so far to go, but when we look back, we can see that he is moving forward. It sometimes feels like we put in miles and miles of work only to move an inch forward, but those inches add up.

Braden has benefited immensely from the intense daily therapy. He has gone from a child who is completely paralyzed to a kid who can walk short distances. He no longer uses his power wheelchair. He’s learned to write with his left hand. We used to have to suction saliva out of his mouth every few minutes and now he can go more than an hour without suctioning. His tracheostomy is capped or closed off during the day and he only uses his ventilator at night on the lowest settings.

We’re so proud of how far he’s come and the progress he’s made with his TIRR Memorial Hermann team, and we’re looking forward to seeing him progress even more.

By Rachel Scott

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