Updates on Zavier

22/09/2025

Today Zavier had surgery for the port.

The surgery went smoothly with no complications. Since he has been awake he is pretty much back to his normal self.

If Zavier behaves and stays stable tonight then we will be able to go home tomorrow.

15/09/2025

Hi everyone,

I’m so sorry I haven’t posted an update sooner — it’s been such a hectic week.

Zavier is home and doing okay, though he still needs oxygen. We’ve recently learned that he is in type one respiratory failure, which has been a lot to take in and process. I think that’s why I’ve been a little quiet on here.

Moving forward, Zavier is booked for surgery next Monday to have a port placed. As many of you know, he has a really hard time with vein access, so we believe this will be the best option for him.

We also have quite a few upcoming respiratory appointments to help manage his condition. The plan is to start a 2 week course of antibiotics by IV in two weeks, but that may change depending on how he goes. He’s also been referred for chest physiotherapy, a cough therapy program, and a sleep study — so there’s a lot happening.

On top of this, Zavier is experiencing bladder issues. We have an appointment with a surgeon on Tuesday to discuss whether surgery or catheters will be the best way forward. He’s also having ongoing stomach issues, and doctors are investigating whether ulcers might be the cause of his constant reflux.

It’s been a whirlwind of appointments, tests, and planning, and I truly appreciate your patience while I get updates out.

Thank you all so much for following along and supporting our beautiful boy — it means the world. 💙

06/09/2025

After a very long 11 hours in ED we are finally on the ward.

Zavier has rhinovirus and pneumonia again 🤦‍♀️

He is currently sitting on 4 litres of oxygen and we are waiting for respiratory physio 

06/08/2025

Nine whole years of loving you

Happy 9th Birthday to the strongest little human we know ~ our beautiful boy.

Watching you grow into such a spectacular little person has been the greatest gift.
The past nine years have thrown unimaginable challenges your way, yet you continue to fight with incredible strength and determination always with a smile on your face.

You’re so full of joy, courage, and resilience. You never give up.
You are our hero, our inspiration, and truly our reason for everything.
We’ve learned so much from you, and we honestly can’t imagine life without you.

Keep fighting, our beautiful boy, the world is a brighter place with you in it.

Worlds can not describe how much we love you

30/07/2025

ZAVIER FIRST DAY BACK AT SCHOOL (after one year and eight months)

05/07/2025

UPDATE

Where do we even start?

Okay so on Thursday night Zavier hit a really critical moment and had respiratory code blue called on him.

He had a temp of 40 which then also kick started ongoing seizures, he was blue and red patchy all over with blue/black fingernails and toenails. He had no lung airflow and was in a serious state. His left lung has partially collapsed.

They finally stabilised him by 6am Friday morning. Friday he slept most of the day and only required oxygen.

We have had many discussions with respiratory, they are organising on Monday for a sleep oxygen plan to go home with, as that’s when he needs oxygen the most.

They are also putting him on antibiotics for the next 6 months as this is his 6th respiratory infection he has had in a short period of time.

They will also be doing a CT Scan on his lungs when he recovers, to assess the extent of the damage to his lungs from all of these ongoing infections.

His cerebral palsy has moved to a level 5 and is the reason why he is having so many respiratory problems.

At the moment he is stable, he still needs nebs and deep suction to help clear his chest as well as oxygen when he's sleeping but today he has been more alert and most of the time is happy.

Hopefully we’ll get to go home in the next two to three days.

03/07/2025

03/07/2025

We are back,
Zavier has secondary pneumonia 

16/06/2025

We broke out of PCH,

We are not out of the woods yet, we still need to closely monitor him. we have a new at home oxygen plan in place, as well as a nebuliser plan.
We will be having on going respiratory outpatient appointments as well.

Zavier decided that he wanted to come home, he was to restless and distressed being confined to a bed

For the most part he is doing really well and only needing oxygen when he is sleeping.

11/06/2025

Our beautiful Zavier is back in hospital.

He is fighting pneumonia, as well as rhinovirus and we suspect he has tonsillitis as well but are waiting for the sepsis test results to come back.

He is on a nebuliser every hour as well as being on high flow oxygen. They are keeping a very close eye on his lungs as they are worried his right one may collapse. 

We will keep you all updated.

14/05/2025

How kids sleep in the most weirdest positions.

My boy, you just look so peaceful