The Story Of Our Little Warrior Neil Saiesh

Neil started vomiting.

We had just begun something new with him.

Minimal feeds – just 10 ml of milk, Neokate, a peptide-based light formula.

One feed a day. That was all his body was being asked to take orally.

For a baby his age, that was barely anything. Maybe one-third of what he should have ideally been taking.

But TPN was sustaining him. His calories were being carefully managed through it.

That was how he was growing. Slowly. Little by little.

And then, starting February 2025, something changed.

The vomiting began.

At first, it didn’t feel alarming. But it didn’t stay that way. The vomit increased. It was bilious. And then something else followed.

His stool output stopped.

By now, we had learnt enough to understand patterns. Vomiting with no stool output was not something to ignore.

We knew this meant something was wrong.

We called Dr. Dinesh.

He told us immediately, if he is vomiting, the NG tube needs to go back in. The risk of aspiration was too high.

So we went to the hospital and got the NG tube inserted again.

Life slipped back into a familiar rhythm.

Every afternoon, Neil’s TPN would be changed.

Benjamin brother would come home, do the dressing change, line care, ensure everything was sterile, help us with Neil’s bath, and reconnect the TPN.

Once connected, Neil would be on TPN for the next 24 hours.

We would adjust the infusion pump only to administer medicines.

Somewhere in between all of this, we had even started stepping out a little.

After his bath, we would take him out for a short walk. Just a small round outside the house.

And then back in. Back to the line. Back to the system.

It felt like we were slowly building a life.

Until 11th February 2025.

Benjamin brother was doing his routine.

And then, in the middle of it, he paused.

He looked at the line.
Then at Neil.

And then again at the line.

There was a small cut on the Hickman line.

The line that was his lifeline.

Benjamin brother is the calmest person in chaos. Even in moments that should shake you, he steadies the room.

He continued the dressing carefully.

Then said, “It may not be an immediate concern… but we will have to change the line.”

Change the line.

That sentence stayed.

Because we knew what it meant.

The risk of not changing it was not something we could take.

Air entering the line, infection, both life-threatening, especially when the line connects directly to the heart.

There was no compromise possible.

But changing the line meant another procedure.

And procedure meant anaesthesia.

The cycle we knew too well.

Meanwhile, Neil continued vomiting.

And yet… he remained himself.

Smiling. Playing. Laughing.

Even in moments where everything felt heavy, his presence gave us a strange kind of relief.

A different kind of comfort.

The kind that only comes from holding your child.

He had now started sleeping in an oonjal (Swing, Jhoola).

Every afternoon after his TPN change, he would nap there.

Even if he woke up vomiting, the NG tube helped prevent aspiration.

12th February 2025 – Jerrin’s Birthday

His first birthday with Neil.

I had bought a small onesie for him – Daddy’s first birthday with me.

We had a plan.

Benjamin Anna would come. Neil would have his bath. We would dress him. Cut a cake.

A normal moment.

And then the phone rang.

Dr. Dinesh.

“We need to change the line. We cannot take a chance.”

And just like that…

From cake… to hospital bags.

Taking Neil to the hospital meant packing two bags — one for his clothes, one for all his medical essentials.

We reached around 12:30 p.m. The procedure was planned for 2:00 p.m.

And like always, it meant general anaesthesia.

And the consent forms were back.

Jerrin, on his birthday, stood there signing forms instead of cutting a cake.

But Neil smiled.

And we held on.

He was taken to the cath lab.

About 1.5 hours later, he was shifted to PICU.

Every time Neil underwent anaesthesia, his body would swell. His face, his little body – everything would look puffy.

He was extubated, but in pain. Painkillers were running.

That birthday was spent sitting beside him in the PICU.

But he held on.

He made small sounds. Moved gently.

As if to say, “I am here. Keep going.”

We were preparing for discharge on 13^th February, when Dr. Dinesh told us something important.

Neil’s vomiting needed attention.

By now, Neil had become an expert at pulling out the NG tube. His hands would always find their way to it.

Dr. Dinesh said we might need to consider a G-tube once Dr. Anil returned.

G-tube!!!

Another new term.

Another new reality.

We didn’t fully understand it yet.

But we knew it meant something invasive.

Something surgical.

Still, discharge felt bigger in that moment.

So, we went home.

And we cut a cake for his arrival home and Jerrin’s birthday…

Neil now had a new Hickman line, a slightly bigger line since the earlier one had become delicate.

And through all of this…

he cooperated.

He truly did.

Benjamin Anna and Sakthi-man continued to come daily mostly in turns. Dressing, care, connection, and then they would spend time with him.

They were not just caregivers.

They were part of his world.

Without them, we would have felt lost.

Neil celebrated Valentine’s Day in a pink onesie.

And even with all that was running in the background…

his smile kept us going.

One day, we saw him holding the NG tube in his hand.

He had pulled it out.

Panic, of course.

We called Benjamin Anna.

He came, smiling as always, saying we must have wanted to remove it ourselves seeing how uncomfortable it was for him.

Protocol meant calling Dr. Dinesh.

And the answer was clear.

Reinsert it.

No risks.

So the NG tube was back.

But Neil had learnt.

His hands always found their way to it.

He continued to grow.

Little by little.

And then came 21st February 2025.

Dr. Dinesh called.

“Managing the NG tube is going to be difficult now. We need to go for G-tube insertion.”

A Mic-Key tube.

The MIC-KEY* Gastrostomy Feeding Tube is a low-profile, skin-level device used for delivering nutrition, fluids, and medication directly into the stomach.

A feeding tube placed directly into the stomach through the abdomen.

It would help drain the contents, instead of repeated vomiting.

A small procedure, he said.

But small still meant anaesthesia.

Still meant intubation.

Still meant consent forms.

By now, it had become a routine.

Not the one new parents imagine.

But the one we were living.

22nd February 2025 – G-tube Insertion

Neil was taken into OT around 10:00 a.m.

We waited.

It was supposed to be a 1.5–2 hour procedure.

At around 11:30 a.m., we got a call.

From Dr. Dinesh.

He asked us to come outside OT.

We thought he would update us.

But instead, he said:

“Dr. Anil is going inside.”

Going inside.

Which meant…

Opening the abdomen again.

Exploring.

Looking for the cause.

Relieving any stricture.

This was no longer just a G-tube insertion.

This was another surgery.

His 5th surgery.
His 7th procedure.

We didn’t ask questions.

If Dr. Dinesh said it, we trusted it.

And we waited.

Five hours.

Neil came out around 3:30 p.m.

Dr. Dinesh and Dr. Anil met us.

There was a stricture near the pylorus- the region between the stomach and intestine.

It had been released.

The G-tube was inserted.

The NG tube may no longer be needed.

Another system to learn.

Another responsibility.

And then, almost in passing, Dr. Anil said something.

“I saw the intestine… it looks like there may be more length than we thought. We can look at alternatives to transplant.”

Alternative.

That word stayed.

We didn’t explore it then.

Healing was more important.

Neil came out.

Swollen.

In pain.

But still…

himself.

The G-tube was now draining everything.

And we sat beside him…

wondering if there was any way to make all of this okay.

Any way to take away his pain.

And then…

he woke up.

And smiled.

That one smile brought us back.

Every single time.

He was ready for discharge again.

With a new tube.

A bigger scar. A big big scar on his abdomen. Almost a cross made on his abdomen. And we knew healing through this would take time..

And the same strength.

Our brave little warrior.

And just like that…

We were heading home again…after his 5th surgery..