Update’s on Zavier our little warrior

25/12/2025

23/12/2025

Hey everyone,

We’re so sorry we haven’t updated in a little while — the past week has been an emotional roller coaster for our family.

Zavier had a really rough week, with multiple tonic seizures. One occurred while he was undergoing a test, and he became unstable very quickly, which meant he had to be rushed back for urgent care.

We trialled caffeine but had to stop it two days after starting. Today, we’ve recommenced the trial and are hoping it helps. Zavier is now on permanent oxygen (1–5 litres) to assist with his breath-holding episodes and to help prevent him from turning blue.

Unfortunately, this means we’ll be spending Christmas in hospital, but we’re hopeful we’ll be able to come home sometime next week.

Thank you all for your continued love, prayers, and support — it truly means the world to us 💙

10/12/2025

Hello to all of our amazing support system,

First of all, I want to say a huge thank you and so much appreciation to every single one of you who has donated meals or Uber Eats gift vouchers. We are honestly so grateful. Your kindness has helped us more than you know, and it truly means the world to us.

Update…

Respiratory:
From a respiratory point of view, Zavier is doing much better. This round of antibiotics has helped him so much. The plan from here is for him to continue with oral antibiotics through his PEG, as well as an antibiotic via nebuliser for the next month. After that he’ll have a review, and they may continue the treatment depending on how he’s going.

Breath Holds:
Zavier has now started breath holding down into the low 40% oxygen levels and turning blue. Because of this, we have a new plan. He will now be on 1–2L of oxygen throughout the day so that when he does have a breath hold, he has support ready the moment he takes his next breath. This also helps him during the day when he randomly drops into the low 80s without any obvious trigger.

We’ve also discovered that he has traces of Rett-like symptoms, which is now under investigation. They are starting him on a new trial medication aimed at managing the breath holds, so we will see how he responds to that.

Seizures:
He is still having lots of seizures. A couple of days ago he had a bad run of tonics and ended up dislocating his elbow during a tonic-clonic seizure. There was also a scare that he might have broken his arm, but thankfully it isn’t broken. His elbow has been put back into place and is okay, but the seizures are still happening daily and he is still needing rescue medication regularly.

I personally feel that the breath holds are triggering the seizures, so I’m really hoping that if this new trial medication can help reduce the breath holds, we might finally see a decrease in the seizures too.

Thank you all so much for your ongoing love and support throughout Zavier’s journey. We appreciate every one of you, and I’ll continue to keep you updated as the weeks go on.

01/12/2025

Hi everyone,

As many of you know, our beautiful boy Zavier is currently in hospital. Due to the severity of his condition, we’ll be here for quite a while, and most of our days are spent right by his bedside. Things feel incredibly overwhelming at the moment, and we’re doing our best to keep everything at home running while staying focused on Zavier’s care.

A few people have kindly reached out asking how they can help. We feel a bit hesitant to ask, but the truth is that having meals organised takes a huge amount of pressure off us right now.

Thank you all so much for your love, support and kindness — it truly means the world to us.

https://www.mealtrain.com/trains/gze02o?fbclid=IwRlRTSAOZLFZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEel-pHdsto3RY6xlKNgCr5evbPJ9NXHLryDJ7M4BMJb2hs__fYT39kZG-y3eo_aem_POZWpOrPnbukyy_wFBsCow

Hi everyone, As many of you know, our beautiful boy Zavier is currently in hospital. Due to the severity of his condition, we’ll be here for quite a while, and most of our days are spent right by his bedside. Things feel incredibly overwhelming at the moment, and we’re doing our best to keep eve...

01/12/2025

Hey Everyone

Over the last 24 hours Zavier has gone downhill again. He’s been having constant breath-holds and seizures, and he’s now back on high-flow oxygen.

The team are unsure about the next steps because he’s finally awake and alert, but if they give him rescue meds, he’ll be completely zoned out again so we are just taking things hour by hour right now.

Thank you all for your love and support — it really does mean so much.

30/11/2025

After 10 days of being non-responsive and relying on high flow to breathe, Zavier is awake, alert and clearly feeling better. Just look at that beautiful smile!! He's not out of the woods yet but things are looking very promising, he's responding to the treatment very well. Our tough little warrior just keeps on fighting, he's just so amazing isn't he!! 😁❤️

29/11/2025

Update:
Results have finally come back. Zavier has pseudomonas pneumonia. Records show he has had it since September but it was missed and he was put on the wrong antibiotics last time he was in hospital for pneumonia which is why he has become so unwell. Yesterday they started him on the correct treatments and we should start seeing improvement within the next 72 hours. It is expected that Zavier will be in hospital for at least another 2-3 weeks during which time the treatment will be ongoing hopefully to get rid of the infection once and for all.

Will update you all again soon ❤️💜💚

25/11/2025

First, we just want to thank you all for your love, support, and well wishes. We truly appreciate every message, every call, and every prayer. Your support is helping us get through yet another difficult time.

Zavier is still very unwell. Last week he had X-rays which showed pneumonia still present in his lungs. Yesterday he had another X-ray, and the pneumonia has developed further, although his bloods still aren’t showing any signs of infection.

The doctors believe his lung issues are being caused by him aspirating during seizures. They also believe the seizures are being triggered by hormonal changes in his body. They have adjusted his VNS, and now we just have to wait and see how his body responds.

He’s also not urinating, and while the ultrasound came back clear, the doctors think this issue may be neurological. His heart rate and blood pressure continue to fluctuate, and he’s needing oxygen often.

There is a lot going on, and he’s mostly non-responsive, but he is not showing any signs of distress. We’re monitoring him closely and keeping him as comfortable as possible.

His little body just needs rest, time to heal, and time to readjust to the VNS changes.

We’ll update you all again when we know more.

Thank you again for all your love and support. ❤️💜💚

20/11/2025

Our beautiful boy is back in hospital. He’s having a really hard time with his dystonic apnoea and seizures, and on top of that, he’s been experiencing very low blood pressure and heart rates.

We’re still working with the doctors to find out why this is happening, but I wanted to give you all an update on how he’s doing.

Thank you to everyone who continues to check in, send love, and keep him in your thoughts. Our little warrior is fighting hard. 💜💚

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