Wednesday morning began with heavy hearts.
Wally’s parents met with the palliative care team — a crucial step toward understanding options and, perhaps, acceptance.
For over two hours, they asked questions no parent should have to ask.

They had to decide which interventions were acceptable, how far to go to help their son, and when to let go of prolonging suffering.
It was heavy, but also freeing to voice these thoughts in a safe space.

Wally’s condition was complex.

During a metabolic crisis, he could suffer an acidotic stroke, brain damage, or regression — all leading to rapid decline.
Right now, it was unclear if his inability to breathe on his own came from disease progression in the brainstem or an acute event that could improve with time, medication, and therapy.

Yet miracles still happen.
The MRI showed no stroke.
Everyone was shocked; everything had pointed toward the worst.

Faith and prayers seemed to have carried him through.
Even in the midst of fear, Wally had given his parents hope.

In the hospital, Wally communicated using a device.
He told them he was done with therapy and wanted to watch his favorite show.

He even signaled the nurses when he needed suctioning — small signs that the crisis hadn’t stolen him.
He was upset, crying silently because of previous brain damage.
They were weaning him off sedation to force him to breathe on his own, which made him uncomfortable and clingy.

He wanted to be held.
He wanted the tube out.
And they couldn’t give him what he wanted.

It was heartbreaking.
Yet every moment of holding him, every small victory in therapy, reminded them to take it one day at a time.
Wally failed his breathing test at night, struggling to maintain volume on his own.
Secretions were heavy, but his lungs sounded clear.

Rounds were intense; the respiratory therapist advocated fiercely for him when the attending dismissed concerns.
A strong nurse also stood up for Wally — together, the team listened, cared, and fought with them.

Wally was mischievous one morning, trying to pull out his tube.

The nurse flew across the room, keeping the tube in place like a superhero.
His parents watched, hearts racing, thankful for the dedication surrounding their boy.

Small victories began to appear.
He peed successfully — a milestone for his bicarb levels and labs.

Adjustments were made: sodium bicarbonate stopped, D10 restarted.
Labs improved dramatically.
He tolerated lower sedation, accepted restraints willingly, and even managed a few smiles and giggles.

The Rainbow Kids palliative care team bridged communication and advocated alongside his parents.
Every nurse showed unmatched care and attention.
It was clear that Wally was heading in the right direction.

Through all the uncertainty, through every challenge, Wally’s parents witnessed miracles.
They continued to pray, trusting that God would guide his healing and that Wally would show them what he truly needed in time.
Every small smile, every successful breath, every lab improvement — proof that prayers were working.

Wally’s journey is far from easy.
But faith, hope, and the unwavering dedication of those around him keep his tiny heart beating strong.
And through each moment, his parents know this: miracles happen, even one breath at a time.