The Story Of Our Little Warrior Neil Saiesh

Neil was growing beautifully.

Perfectly.

Yes, he had his own developmental delays when it came to physical milestones. But socially?

Oh, he was right there.

Responsive. Expressive. Playful.

By then, we had also settled into our regular paediatrician visits for vaccinations and general care. Slowly, it felt like we had entered a phase where life was trying to become normal again.

And then came a milestone we had waited so long for.

Neil reached 6 kilograms.

Six kilos.

On continuous TPN for almost eight months.

That number felt impossible once upon a time.

But there he was.

Growing.

Thriving in his own way.

It truly felt like the puzzle pieces were slowly falling into place.

Neil would get a few hours’ break from TPN in the afternoons. Those few disconnected hours had become precious to us. We started taking him out more. Small walks. Fresh air. Watching people. Watching lights.

Then came stroller walks to the park.

Neil loved going out.

His eyes would keep moving around, observing everything. Every sound interested him. Every movement excited him.

And for a brief moment…

life almost felt ordinary.

Until it didn’t.

Around mid-June 2025, Neil developed fever.

We took him to our paediatrician, Dr. Shyamala, at Apollo. The moment she saw his breathing pattern, she immediately said:

“He needs admission.”

She suspected dengue and advised tests immediately.

But more than the fever, something felt off about his activity levels.

Neil, who was usually expressive and alert, just wanted to sleep.

That scared us.

So naturally, there was only one place we wanted to go.

To Dr. Dinesh.

Only if he saw Neil would we feel reassured.

By then, Neil’s PICU routine had become predictable.

Reach hospital.
Blood tests.
Cultures.
Then everything else.

And as usual, all of it was done immediately.

The tests surprisingly did not show infection.

But his breathing still felt odd.

So nebulisation was started.

Flu panels came negative.

His fever settled.

And because Dr. Dinesh was always extremely cautious about hospital-acquired infections for Neil, he preferred early discharge whenever possible.

So two days later…

we were walking back home.

Neil was recovering slowly.

But something still felt wrong.

It was his G-tube site.

The area around it had become swollen.

There was irritation. Pain.

Something did not feel right there.

We came home on 23rd June 2025, and about three days later, we noticed something alarming.

The contents draining from the Mic-Key tube had changed colour.

Normally, bile is green.

This time…

it was pale.

Almost white.

And by now, we knew enough to understand that colour changes in bile were never casual observations.

It meant something involving the liver or bile flow was wrong.

We had almost become half-medical researchers by then. Terms, reports, lab values — all of it had become part of our daily language.

Then around 28th June 2025, I noticed Neil’s eyes.

Yellow.

It did not take us long to realise.

Neil had jaundice.

His bilirubin had shot to 4.8.

Panic set in immediately.

Because somewhere deep inside us, we had always feared this day.

Long-term TPN affects the liver.

We knew it.

But knowing something medically and hearing it happen to your own child are two very different things.

We called Dr. Dinesh immediately.

As always, his approach was calm first.

Medicines first. Observe. Reassess.

And he started Neil on syrup medication.

At the same time, Neil continued having pain around his G-tube site. The irritation was clearly bothering him.

But we had learnt by now to settle one problem at a time.

Around then, my sister and nephew were finally coming from Canada.

My nephew, Yajas, had been waiting forever to meet Neiloo.

He prayed for him every single day from Canada. He knew Neil’s entire journey through video calls. He watched his activities, his smiles, his hospital visits.

This was going to be their first meeting.

And my sister…

Shalini…

There are some people who stand beside you so quietly and so consistently that you sometimes forget how much of your strength comes from them.

For me, that person was my sister, Shalini.

No matter the timezone, no matter how helpless she must have felt sitting miles away in Canada, she never stopped being there for Neil. Every surgery, every emergency, every difficult day, she carried it with us. She prayed for him relentlessly, cried for him silently, celebrated every gram he gained, and held hope for him with everything she had.

And honestly, during this journey, she was not just his aunt.

She was his second mother.

And I don’t think I will ever find enough words to thank her for loving my child the way she did.

Me, Appa, and Jerrin went to pick them up from the airport while Amma stayed home with Neil.

And when they came home…

the happiness Yajas had seeing Neiloo and his Banuma cannot be described in words.

The house suddenly felt fuller.

Warmer.

Alive.

Yajas would sleep next to Neil, hug him, and keep talking to him endlessly.

Sometimes Neil would sleep peacefully while Yajas watched him.

And sometimes Yajas would quietly wake him up and come running to us saying:

“He is not even sleeping… naughty fellow!”

For the first time in a long time…

the house felt like a house with children.

Two little boys together.

And it was beautiful to watch.

Yajas left briefly around 3rd July for his Tirupati tonsure ceremony and returned around 7th July.

And then came 8th July 2025.

A date I will never forget.

Benjamin brother had come home as usual in the afternoon for TPN management.

Neil had his bath.

And Benjamin Anna was dressing the wound around the G-tube site.

The swelling there had become painful. Neil was crying irritably while Benjamin brother cleaned the area.

And then…

something happened that froze me completely.

The moment Benjamin brother slightly pressed near the swollen site…

Neil had a seizure.

His hands and legs started jerking uncontrollably.

His eyes rolled upward.

And within seconds…

the entire house turned into panic.

The only thing I kept thanking God for was this:

Benjamin brother was there.

Monitors were switched on immediately.

His saturation started dropping.

He needed oxygen.

His heart rate started fluctuating dangerously.

For a few horrifying seconds…

he froze.

He stopped moving.

I screamed.

I cried.

I did not know what to do.

My mother started searching for emergency medicines Benjamin brother was asking for.

I knew I had to call the ambulance.

I remember crying on the call, begging them to come quickly because Neil needed oxygen.

Benjamin brother remained calm.

But he knew this was serious.

He immediately called Dr. Dinesh, and Dr. Dinesh asked us to rush to hospital immediately.

Those few minutes waiting for the ambulance felt endless.

Neil’s temperature was dropping.

His heart rate was dropping.

Benjamin brother administered emergency medication to maintain his heart rate.

He physically held Neil’s jaw up, kept stimulating him, tapping him hard enough to keep him responsive, to keep him making sounds.

I can still see those moments vividly.

And somehow…

the ambulance arrived within five minutes.

Oxygen support was started immediately.

We lifted Neil and rushed straight to PICU.

This was Neil’s first seizure.

And there was no fever causing it.

Which meant something else was happening.

The suspicion was immediate — severe pain from the infected G-tube site had possibly triggered electrolyte imbalance, leading to seizure activity.

Blood tests were sent urgently.

Sedatives were given to calm the brain.

And finally…

Neil slept.

But none of us did.

The reports came back.

There was severe calcium imbalance.

And his G-tube site was clearly infected.

The Mic-Key button had to be removed immediately.

In its place, a Foley catheter was inserted to ensure continuous drainage so that Neil would not vomit.

Because remember…

Neil still was not pooping.

We still did not fully know what was happening inside.

By then, things were slowly becoming more complicated internally.

All nutrition was through TPN alone.

Electrolyte balance was becoming difficult.

The liver was beginning to struggle.

Everything now needed extremely careful management.

And ironically…

we had almost reached the transplant target weight.

6.5 kilograms.

Neil was nearly ready.

We were just waiting for a donor.

During this admission, Dr. Dinesh suggested something important.

An endoscopy.

To finally understand why poop was still not passing.

Which meant another procedure.

Another general anaesthesia.

We thought we had escaped that conversation for a while.

But no.

It was back again.

And as always…

when Dr. Dinesh says we do it, we do it.

No questions asked.

The seizure was eventually concluded to be a one-time event triggered by calcium imbalance and pain.

Corrective treatment was started immediately.

The next morning, the endoscopy was planned.

As always, general anaesthesia meant intubation.

Neil was intubated and taken to the endoscopy lab.

About an hour later, Dr. Dinesh came out.

There appeared to be another stricture near the previous bowel joining site between the colon and intestine.

Finally…

we had an explanation.

That was why the poop never really came.

At one level, it gave answers.

At another…

it felt exhausting.

As though Neil’s intestines were constantly playing games with him.

Usually, after procedures, Neil would return extubated and breathing comfortably in room air.

This time…

he came back intubated.

That felt unusual immediately.

But because of the seizure episode and electrolyte instability, the doctors did not want to extubate him too quickly.

Eventually he was extubated and shifted to HFNC — High Flow Nasal Cannula support.

HFNC delivers heated, humidified oxygen at high flow rates to support breathing.

Usually Neil would quickly move back to room air.

This time…

something felt wrong.

Even after two days, he was unable to maintain saturation without oxygen.

The moment support was removed, he would desaturate.

More doctors entered the picture.

More blood work was sent.

And then another pattern appeared.

His platelets were dropping.

Rapidly.

That meant more specialists.

More discussions.

More waiting.

The PICU consultants began suspecting something called HLH.

Another terrifying medical term.

We Googled it.

And honestly…

we wished we hadn’t.

It was overwhelming even to read about.

Some kind of severe autoimmune hyperinflammatory condition.

But nothing was confirmed yet.

Only suspicion.

Only possibilities.

A week passed.

Neil still required minimal oxygen support.

Only 1 litre.

Very small support technically.

But concerning enough because Neil usually needed none.

Then came the chest X-ray and CT scan.

The CT showed fluid collection in the lungs.

And then came another diagnosis.

ARDS — Acute Respiratory Distress Syndrome.

I shattered hearing those words.

As though the abdomen battles were not enough…

now lungs too?

I remember standing there wondering where exactly this was heading.

His platelets dropped further.

Down to 15,000.

Platelet transfusions were discussed.

Haematologists were called.

And then they suggested IVIG — Intravenous Immunoglobulin therapy.

A treatment using donor-derived antibodies to help regulate immune responses and severe inflammatory conditions.

The infusion was started.

And somehow…

through all of this…

I still believed in Neil.

And in Dr. Dinesh.

I believed Neil had already seen worse.

And survived.

And somewhere, Dr. Dinesh’s calmness became our strength.

I remember him walking in one day and saying:

“This is all because of long-term TPN. These are known complications. It can be managed.”

And somehow, hearing him say that…

gave us peace.

Because if he was not panicking, we knew we still had room to hope.

Another week passed.

Slowly, the lungs began improving.

Trials without oxygen were started.

Three hours off oxygen.

Then support again.

Allowing the lungs time to heal.

And around 20th July, his X-rays finally started looking better.

At home, Yajas had come all the way from Canada to play with Neil.

And Neil had spent almost the entire trip inside a hospital room.

Fifteen days had passed.

Then came 23rd July 2025.

My birthday.

And just like Jerrin’s birthday earlier…

we were in a hospital again.

I had no mood to celebrate anything.

It all felt deeply unfair.

Neil would fight like a warrior every single time.

And yet life kept throwing more at him.

I just wanted to be next to him.

So I hugged him and slept beside him.

Later that evening, because my sister was in town, we went for a small dinner.

And then I came right back to my Neil.

Finally, on 24th July 2025, Dr. Dinesh said the words we had been waiting for.

“We can discharge him.”

Neil no longer needed oxygen support, though we were advised to keep backup oxygen at home just in case.

And just like that…

Neil came home again.

Reunited with Yajas.

The boys were together again.

And looking at him then…

it genuinely felt like Benjamin brother had resurrected him from that seizure day.

Soon it was time for my sister and Yajas to return to Canada.

I know Yajas was deeply sad.

But he stayed brave.

Yajas was a little boy who never once looked at Neil with fear, confusion, or difference.

To him, Neiloo was simply his little brother.

He prayed for him every single day from Canada, waited endlessly to meet him, spoke to him on video calls, celebrated his smallest milestones, and loved him with the purest heart possible.

Watching the two of them together brought a different kind of happiness into our home. A kind that made us forget hospitals, monitors, and medicines for a while.

And the way he held Neil’s hand before leaving for Canada, recited Hanuman Chalisa, and said, “Next time I come, he will not have any TPN”…

I don’t think he realises how much strength that little sentence gave all of us.

Neil was lucky to have a brother like him.

And we were lucky to witness that bond.

Neil spent the rest of July recovering beautifully.

Like always…

he bounced back.

Then came 16th August 2025.

Janmashtami.

And every child in the house becomes Krishna that day.

So naturally…

our Neiloo had to become Krishna too.

We bought him the cutest little Krishna outfit.

By then, Neil had started holding his neck beautifully, sitting with support, moving around more actively.

So we dressed him up.

Made him pose.

Clicked endless photos.

And honestly?

He looked divine.

Neil was growing.

His milestones were coming.

Yes, he had not rolled over yet.

But it hardly mattered.

Because he was progressing beautifully in his own way.

Physiotherapy had started at home.

And he was responding wonderfully.

By then, Neil was also medically ready for transplant.

The only thing missing…

was a donor.

Around the first week of August, Dr. Dinesh and Dr. Anil met us and told us something hopeful.

They wanted to attempt bowel lengthening surgery.

Dr. Anil believed there might be more usable native bowel than originally expected.

The plan was this:

If an organ became available, they would assess intraoperatively whether Neil’s own intestine could be lengthened and partially supported with donor bowel.

If not, full transplant.

Everything depended on what they found during surgery.

And everything depended on a donor arriving in time.

At the same time, Dr. Dinesh also mentioned something else.

Because electrolyte management was becoming increasingly difficult and TPN complications were slowly building up, they might consider going in surgically by end of August even if a donor had not arrived yet.

Something had to move forward now.

And amidst all this…

came another milestone.

26th August 2025.

Neil’s star birthday.

Our little boy was turning one.

We knew he had never truly had the privilege of celebrations.

No functions.

No gatherings.

No normal birthdays.

Life had always revolved around lines, TPN schedules, and hospital admissions.

So this time, we decided to do something small.

A pooja.

Very intimate.

Very simple.

We started discussing arrangements at home.

Priest. Food. Decorations.

Nothing extravagant.

Just enough to celebrate our warrior turning one.

And slowly…

excitement entered the house again.

But then came 25th August 2025.

And what followed after that…

became a very different battle altogether.

I had seen the happiest version of Neil by then.

The highs.
The joy.
The hope.

And what was waiting ahead…

was something I was never prepared for.

Not then.

Not even now.