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Los próximos pasos de Alora
Como cualquier niño pequeño, Alora mantiene a su madre, Sarah, siempre alerta. Es curiosa, juguetona y llena de energía, pero además de las travesuras habituales de los niños pequeños, Sarah también vigila de cerca la traqueotomía y la sonda gástrica de Alora.
Alora nació prematuramente con complicaciones de salud, pasó sus primeros cinco meses en la UCIN y se sometió a una doble intervención para colocarle una traqueotomía y una sonda gástrica. Aquellos primeros días fueron abrumadores, pero con la orientación de los médicos, las enfermeras y Marco, su terapeuta respiratorio de Wave, Sarah encontró el apoyo y la confianza que necesitaba.
«Marco se tomaba el tiempo necesario para reunirse con nosotros en las citas y asegurarse de que me sintiera preparada», compartió Sarah. «Sabía que estaba asustada y nos ayudó a elaborar un plan».
Hoy, Alora está prosperando, recientemente dio sus primeros pasos y está en camino de que le retiren pronto la traqueotomía. Sarah ha crecido junto a su hija, asumiendo su papel de firme defensora y cariñosa cuidadora.
Lo que comenzó como un viaje aterrador se ha convertido en una historia de resiliencia, alegría y crecimiento. En Wave Healthcare, nos enorgullece acompañar a familias como la de Sarah, ofreciendo nuestra experiencia de forma accesible y un cuidado que ayuda a niños como Alora a seguir adelante, paso a paso, sonrisa a sonrisa, hito a hito.
El sol de Audrie
El camino de Audrie nunca ha sido fácil, pero siempre ha estado lleno de luz. Nacida con una rara enfermedad que le afectaba las articulaciones y los músculos, y más tarde enfrentándose al impacto de la meningitis bacteriana, Audrie ha superado en sus 14 años más de lo que la mayoría enfrenta en toda una vida. Los respiradores, las traqueotomías y las innumerables estancias en el hospital han formado parte de su historia, pero también lo ha hecho su sonrisa, ese tipo de sonrisa que ilumina cualquier estancia y que le ha valido el apodo de «Sunshine» (rayo de sol).
El verano pasado le trajo una de sus batallas más duras hasta la fecha, pero fiel a sí misma, Audrie la afrontó con resiliencia y elegancia. Rodeada de su familia, su fe y el apoyo de su equipo de cuidados, volvió a salir adelante, recordando a todos los que la rodeaban que la esperanza es más fuerte que el miedo.
Hoy en día, Audrie sigue siendo una fuente de inspiración. Ella enseña a quienes la conocen a celebrar las pequeñas victorias, a apoyarse en la comunidad y a encontrar la alegría incluso en los días difíciles. Su historia es una historia de valentía, perseverancia y amor incondicional, un recordatorio de que la luz de cada niño merece brillar.
En Wave Healthcare, nos sentimos honrados de formar parte de historias como la de Audrie, historias que nos muestran el poder de la fe, la familia y la atención compasiva. Porque detrás de cada equipo hay un niño con futuro, y detrás de cada viaje hay una razón para creer en la esperanza.
El valiente comienzo de Watson
Cuando la madre de Watson se enteró por primera vez de que podría haber complicaciones en su embarazo, nunca imaginó el camino que le esperaba. Nacido a las 37 semanas, Watson fue un bebé muy dulce desde el principio, pero su pequeño corazón y sus pulmones necesitaban cuidados especiales. Tras semanas en la UCI neonatal, múltiples operaciones y innumerables altibajos, su madre nunca dejó de luchar por él, buscando respuestas y asegurándose de que Watson recibiera los cuidados que realmente necesitaba.
En el camino, Wave Healthcare se convirtió en parte de su historia. Después de probar con otra empresa, la familia de Watson volvió a Wave porque, en palabras de su madre, «siempre se aseguraban de que todo estuviera bien y se tomaban el tiempo necesario para comprender y defender a mi hijo». Ese tipo de colaboración marcó la diferencia.
Hoy en día, Watson está prosperando. Camina, empezará el colegio este otoño y, fiel a su personalidad alegre, es un gran aficionado a la comida. Desde las cirugías y terapias hasta los hitos cotidianos, su resiliencia brilla con luz propia.
La trayectoria de Watson nos recuerda que los niños son más fuertes de lo que pensamos, que los padres son poderosos defensores y que, con el apoyo adecuado, las familias pueden superar incluso las épocas más difíciles con esperanza. En Wave, nos sentimos honrados de acompañar a familias como la de Watson, celebrando cada paso adelante, cada bocado disfrutado y cada hito brillante que se avecina.
Ryan Mann's Story
As the youngest of six siblings, Ryan came into the world fully loved by a big group of people. They rallied around him as he spent a couple weeks in the NICU. After a time, the doctors sent him home without a diagnosis.
Some of his symptoms included seizures and scoliosis, but he tested negative for all the genetic issues doctors hypothesized. Over time, his loved ones concluded that they didn’t need a label to know how to best care for him, Ryan’s mom Tina said.
Part of that care required a durable medical equipment provider. Tina found Wave Healthcare when Ryan was about two years old. Wave provided his formula and later helped with pulmonary needs. Tina called her random DME selection a “huge blessing.”
“The entire healthcare team has always been so helpful, making it easier to take care of Ryan.”
Ryan didn’t have a diagnosis until after he turned 15 years old. Eventually, doctors repeated a test that showed Ryan has Pallister-Killian Syndrome, a rare genetic disorder. The diagnosis was the perfect fit for Ryan’s symptoms. While it didn’t give them any new information, Tina said it offered a possible prognosis and a community.
“[The diagnosis] is nice to have. It gives us a community of people, and it gave us a label… but at this point we’ve come to accept that he’s Ryan. We just try to help him live life to his very fullest and try to move forward with that.”
«Vivir la vida al máximo» requiere un poco más de esfuerzo en comparación con otros adolescentes, pero las actividades son similares. Tina dijo que a Ryan le encantan las aventuras y siempre está deseando explorar nuevos lugares. Algunas de sus salidas favoritas son el Doseum, el zoológico y los jardines botánicos.
«Solo quiere estar involucrado en todo», dijo Tina.
Y, como todos los adolescentes, le gusta especialmente participar en todo lo que hacen sus amigos. También tiene momentos de descaro, pero Tina dice que siempre es en broma. Cuando Ryan se enfada con ella, empieza a llamarla «Sra. Potato Head» a través de su dispositivo de comunicación.
Este punto de normalidad llegó después de algunos momentos difíciles. Tina dijo que eso es algo que le habría dado esperanza a su yo del pasado desde el principio.
“Things will start to feel normal. You will find your normal. It may be really different from what you imagined, but you will find a normal, and it will be good. Every day won’t feel hard. That’s important to remember in the beginning.”
En los buenos momentos, en los malos momentos y en los momentos cotidianos, el grupo de apoyo de Ryan lo cuidará lo mejor que pueda, y él aportará la aventura (y alguna que otra impertinencia).
Madison's Story
Meet Madison! She loves listening to music, going to Costco, and being outside. Her mom – Bregite- and nurse often play Selena to get her smiling and in a good mood.
Madison and her family have been with Wave Healthcare since 2016 due to Madison’s complex health issues. She has a G-Tube, trach, and ventilator which initiated a big learning curve for her parents. Today, they have a system for the equipment that works best for them. They developed their skills through asking lots of questions and trusting medical professionals.
Bregite’s advice to new parents of a child with complex health issues is to ask a lot of questions, “I always tell everybody, I don’t know what I don’t know. So, whoever is the professional needs to tell me. Just ask questions, there are no dumb questions.”
A compassionate health care team can offer invaluable education and support. Bregite said their family has stayed with Wave for a decade because of their responsiveness and knowledgeable respiratory therapists. She also said Wave goes above and beyond to create meaningful experiences for their patients.
“We’ve stayed with Wave because their support and all the little things they do for us. Wave helps us go to Fiesta every single year, I love it. Because these kids don’t get to go out to a lot of these events. When you have a company who supports an event for these families to go out and have fun, that’s a very, very nice gesture.”
A professional care team is essential for Madison’s stability and growth, but her parents are the anchors that keep everything together. When asked how she stays inspired during the harder days, Bregite had a clear answer.
“We love Maddie so much. We’re going to do everything we can to help her thrive and enjoy life. That’s our motto.”
Sam's Story
Sam is a Wave Maker who quickly lights up any room she enters with her wide smile and persistent giggle. She loves to dance, go on walks with her dad, and attend school. A new hobby of hers is playing with remote-controlled cars, she even has a little bus she guides around the house.
While she is very active today, last year looked very different for her.
At three months old, doctors diagnosed Sam with infantile spasms, a form of epilepsy. Sam dealt with flare ups on and off for a long time, but then in 2025 she had an intense episode lasting 36 hours. This led to a month-long hospital stay where she was in a coma for most of that time.
Doctors believed the safest way to get her out of the coma would be a tracheostomy and to wake her up gradually. After doctors successfully woke her, Sam and her family moved to another hospital for rehabilitation. This is when Wave Healthcare came into the picture.
Wave’s respiratory therapists showed Sam’s family how to work her IPV, feeding pump, and everything else they needed to be ready to move back home.
Sam’s dad, Pedro, said what started as an intimidating regiment with unfamiliar equipment, quickly became manageable with the guidance of a care team and Sam’s ability to adjust.
“Samantha got used to everything and we got comfortable with it. Now we just get it done and it’s a part of life,” Pedro said.
For families getting ready to transition home, Pedro had some advice.
“Keep patience, especially with your child and try not to be scared. It’s just about learning… read the instruction booklets and get comfortable with the equipment. Remember, you’re the best person for the job because you’re the one who cares the most.”
Pedro’s care has allowed Sam to not only bounce back from her hospitalization but develop new hobbies and strengths. He said Sam keeps surprising her family with her new interests and abilities. Whatever comes next for their family, they’ll likely be dancing their way through (with a remote-controlled car zooming nearby).
Davanee’s Story
“Goodbye Trach!”
Those were the first two words Davanee said to her respiratory therapist after her decannulation. After 1,301 days with her tracheostomy, Davanee is trach free!
Which means the future is looking brighter after a long journey of twists, turns, ups and downs. Davanee came into this world a month early and with a congenital diaphragmatic hernia. Her doctors described her lungs as “squished like a pancake,” which they fixed through surgery conducted when she was three days old.
She spent five and a half months in the NICU with her parents cheering her on the whole time. Doctors said that to go home, Davanee would likely need a tracheostomy. Her mother, Marlene, felt resistance to the idea. Davanee had already been through so much. Would another surgery be worth it? Ultimately, she listened to her doctors and Davanee underwent the tracheostomy.
“A week after she got trached she had the biggest smile on her face. That’s how I knew we made the right decision,” her mother, Marlene, said.
Through the hard times, Marlene said that Davanee kept her parents hopeful with her fighting spirit.
“There were times I was breaking down myself and I would see that nothing was stopping her, so she was our motivation as well,” Marlene said.
Marlene now extends that motivation to other moms with children currently in the NICU. Her time waiting for Davanee to grow stronger taught her the importance of community and reaching out to parents in a similar position. She gives back as a member of Hand to Hold at Texas Children’s Hospital.
“I knew I needed to help others because I know what it’s like. It’s lonely and it feels like nobody understands. I want to be there for other moms.”
Some specific piece of advice she’d like to offer parents in a similar position is to recognize that the bad always comes with good and that what starts as terrifying becomes second nature. Whether it’s learning new equipment, managing appointments, or administering medicine, new parents will figure it out with time.
Now, Davanee is keeping her parents busy in ways beyond the doctor’s office. She’s been bouncing, running, and playing since the day after her surgery. No matter what her family will be on their toes.
Davanee said goodbye to her trach and hello to the rest of her life.
Isabella’s Story
This NICU Awareness month, we’d like to recognize how far NICU babies can go! Isabella is a long-time Wave patient we’ve been lucky to see grow over the years. She first came to Wave when she transitioned from the CHOSA NICU to her home.
Wave respiratory therapists trained her mom, Melody, a few days before leaving the hospital. When Isabella made it home after two and a half months in the NICU, she was geared with just about every piece of equipment Wave provides, including a pulse oximeter, a suction machine, G-tube supplies, trach supplies, and more.
But after years of long days and hard nights, Isabella got decannulated at three years old! Then four years later she reached the incredible landmark of removing her G-tube.
11 years later, Isabella is thriving with only minimal medical equipment. She loves KPOP, recipe books, and nature. She also enjoys popcorn at the movies and laughing with her family.
The NICU shaped her early days and gave her the crucial strength she needed to grow and get healthy. We feel honored to play a part in her success at home.
“The supplies that Wave provided was beneficial, life-saving equipment. Wave is important to Isabella because it kept her healthy and alive,” Melody said.
Other quotes from Melody:
“Trust in your higher power. See your child as much as you can.
Hold your child when you can. Be near them as much as you can.”
Melody had some practical advice as well. She said, “Remember your own nutrition and bring a change of clothes. Your child is getting nutrition in the NICU, so you need to remember to get yours too.”
Detrás de cada ola hay una historia que merece la pena contar. Una serie creada para honrar los viajes de nuestros pacientes, su resiliencia, sus retos y sus triunfos.
A través de #BehindEveryWave, compartimos las voces que nos inspiran cada día, recordándonos que el cuidado es más que un tratamiento, se trata de las personas, su fortaleza y la esperanza que las impulsa a seguir adelante.
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Si tiene alguna pregunta sobre nuestros servicios de asistencia respiratoria y enteral a domicilio, nuestro equipo médico a domicilio, o para solicitar referencias, póngase en contacto con Wave Healthcare, y un miembro de nuestro equipo estará encantado de ayudarle.
