Lucas' Journey

The past year has been a very big one for us as a family, not only with the birth of our daughter & home renovations but our son Lucas contracted the deadly Meningococcal disease - we were lucky enough that we caught it in time and he is now a happy & healthy little 3 year old boy. Below I have written about his battle through the disease, what he went through as well as a few tips that helped me.

Monday April 22nd 2013 was the worst day of my life - my whole world shattered into pieces when the words no parent ever wants to hear were spoken - "your son may not make it".

On Sunday night Lucas was unwell, he had been throwing up & had run a fever of 39.1. I gave him Nurofen, Panadol & plenty of water, I think back now how often are children sick & wake up fine in the morning. During the night he kept waking up crying & by 5.30am, with little sleep for either of us I brought him into bed with me. At this point I was 33weeks pregnant & absolutely exhausted. When I woke at 7am he was so cold & sweaty, I changed his clothes & took his temperature - 35.1 - I rugged him up & offered him some breakfast. In the time it took me to make him some toast, he was fast asleep on the lounge. I tried to wake him, with limited success.

When he finally woke at 8.30am he scoffed 3pieces of toast & drank so much water. I took his temperature again - 35.9 - and noticed purple pin prick dots on the back of his neck, so I checked the rest of his body. Immediately thinking Meningococcal - but dismissing that thought just as quickly thinking "it won't be meningococcal, that won't happen to us". I took a photo of the dots & sent it to my husband, Russell & he told me to make an appointment with our local GP & go from there. This is a picture of the first few dots:

I went about my morning, picking up a few things & dropping off Lucas' vomit covered washing to my mums for her to do while I took him to the Dr. I arrived at the GP at 10.15 for our appointment, by now his legs were mottled in colour & he couldn't walk on his own without crying. The GP said Lucas had a throat infection but was worried about the rash & I should take him to the Paediatric Assessment Unit at the hospital. I walked up the hill to the hospital's main entrance carrying him all the way, the lady at the desk asked if I was going to walk or drive - how far could it be I thought - apparently a 7-8 minute walk.  7-8minute walk my butt! Being pregnant & carrying an extra 16kg of toddler, the walk certainly didn't take me 7-8mins! On the way I rang hubby to give him an update.

When I arrived at the Paediatric Assessment Unit at about 11am, I went straight to the reception & handed them the letter the GP had given me. The receptionist proceeded to inform me that they don't see people without an appointment & my GP should have called ahead if he wanted Lucas seen urgently. Well, me being pregnant & hormonal I burst into tears - fearing the worst! The receptionist told me to take a seat & she would see if someone could see us.

A few minutes later a nurse came out & said that she could see us but they usually don't take patients off the street without an appointment. And again, I burst into tears...gathering my things & following her into the treatment room all the while blubbering.

In the treatment room, the nurse asked me what was going on with Lucas & took a look at his rash. Next thing I know there was at least 10people in the room (doctors & nurses) all around him, trying to put cannula's in his hand & foot & a Dr on the phone to emergency requesting a transfer. I hear her say  "you better send the social worker, the mothers not doing too well." Of course I'm not doing too well! I'm sitting there assuming my worst fears were right & my beautiful little boy has meningococcal, with no one actually telling me anything - only asking me questions but not answering mine. Lucas just laid on the bed crying & scared. I messaged Russell to tell him he should come, it's obviously not good news. By now the purple pin prick rash had tuned into large purple spots, dotted all over his little body.

We were then transferred to the emergency department where there was at least another 10people waiting. The paediatrician told me that Lucas was very sick & I needed to tell them where we had been & who we had been in contact with over the past week - trying to contain the spread & administer antibiotics to those who may have come in contact with him. By now Russell had made the hour drive from work to the hospital in 30mins, as he arrived they were trying to put a central line into Lucas' groin so they could give him antibiotics directly into the big veins - in hopes that it would work quicker. It ripped out my heart hearing him crying & screaming his lungs out - too weak to fight the needle or move away from the pain - him unable to move & me not able to do anything to help him. Russell was holding his hand while I sat with the social worker (who kept trying to get me to eat something, if not for me for the baby). I felt the dread washing over me in waves. The questions racing through my head - "how did he get it?", "could I have been a better mother? Kept a closer eye on him? Or taken him earlier?"..."would he survive?". No parent should outlive their own child...

Russell asked the head doctor what is going on & he explained that they think Lucas had meningococcal & needed to be transferred to John Hunter Hospital for treatment. He had to be air lifted, as he might not have made the drive in the ambulance. The doctor informed us that he may need to be intubated for the flight as he may not have been able to breath on his own for much longer, but they would leave that up to the transfer doctors - they decided against it as they didn't want to risk him not coming out of it.

We got taken to the Westpac helicopter & only one of us could go with him. I went in the helicopter & Russell drove up, in record time I might add! When we arrived at the hospital, there was so many "spectators" watching the helicopter land - not so fun when you're the one on it! It was now 3pm.

We were taken straight to ICU & Lucas was put into isolation, a bank of drips running into his little body. So many antibiotics & fluids trying to keep him alive. The head of the paediatric ICU took us aside for "the talk". You know on tv, the talk that they give the the family when they aren't sure if the person will make it or not - just to prepare them for the worst - not that you can ever be prepared for something like that!

He told us that Lucas had suspected Meningococcal Septicaemia, C strain & has a 50% chance of survival - every hour that he is alive, is an hour closer to him surviving. He couldn't tell us where Lucas got it from nor if he would survive or have any after effects from the disease. Only time would tell.

It was heartbreaking to see our beautiful little boy lying there and not being able to help him. The whole thing had happened so quickly, to think only yesterday he was a happy healthy little boy & now he was lying in ICU fighting for his life. By the time we got to John Hunter both of our families knew, Russell had contacted his side & the social worker had rang my sister & she informed my side. Before we knew it everyone was calling & there for support.

They took blood every hour & his blood pressure every 5minutes to check for progress & make sure he was comfortable. His little body was so swollen due to all of the fluids they had to pump into him. One paediatrician said they had pretty much pumped his whole blood volume of fluid into his little body, trying to keep him hydrated & flush his system. He still wasn't able to move.

Over night he started to improve, he was still alive & we were out of isolation, but still In ICU. More family came to visit, just waiting to see his little face & comfort all of us. He spent the next few days in ICU, slowly improving & the number of drips decreased from 5-6 to 1 - only fluids with oral antibiotics. On Wednesday afternoon we we transferred to the children's ward. So many doctors came through asking if they could bring their students trough to see him & ask us questions - meningococcal is not very common & many doctors go their whole career with maybe seeing one case! We were more than happy to oblige, if we could help one doctor notice the signs & recognise the rash early enough - another family wouldn't not have to go through what we were.

It was a long two weeks in the children's ward, Russell & I spent the whole time at the hospital - day & night. We were lucky enough to have our own room so that we could both stay overnight. Slowly we were able to get him up and moving around again, he had to do physio to get him to be able to use his legs again he was very scared of the pain so it took him a while to be able to hold his own weight without crying. He also had to do breathing exercises to prevent pneumonia because he couldn't move around very much.

Our families came to visit often, bringing plenty of supplies! When Lucas was able, we took him to the fairy garden in the hospital - a beautiful garden patients and their families can go to get out of their room & away from it all.

While we were in hospital, he was lucky enough to have a visit from Snow White & Dopey from The Disney On Ice show. And even though he was very shy & didn't really like Dopey at the time, once they had gone he was very excited!

After two long weeks, we were told he would be able to go home. It was wonderful knowing that he was alive & well! We still had to do physio with him & return to the Paediatric Assessment Unit at Wyong Hospital to have dressings changed & check ups. He also needed a hearing test, just to be sure it wasn't affected.

It was heartbreaking to watch our beautiful little boy in so much pain & so close to death -  but he never lost his spark, it was always there shining just as brightly as the day he came into this world. I would never, ever wish this on anyone & with children it's always better to be safe than sorry.

What Lucas has been through makes me even more proud to call myself his mum, he is one strong little boy. A few weeks ago he celebrated his third birthday and to look at him now you would never know anything ever happened. We were so lucky that we caught it when we did, it's amazing how quickly this disease took over & minutes really do count. Lucas has a scar on his ankle about the size of a 20c piece & one on his bum around a 5c piece size, to show for his whole ordeal. A very lucky little boy, who without his strength through the whole thing I don't know how we would have coped. He amazes us every day & we are so grateful to have him in our lives.

A few things I have always done when he's been sick, I keep all the notes & photos in my phone:
- write down what their temperature is & when you took it
- if, what & when you gave medication
- any symptoms they are showing (temp, vomiting, sweating etc.)
- if a rash appears take photos on your phone (good to show Drs progress of the rash, I have the photo I sent hubby as well as along the way showing how it progressed)

If you are concerned about meningococcal, you can do the "glass test": press a glass onto the rash & if the rash doesn't disappear you should go to the hospital. Google is your best & worst friend. If in doubt always contact your local health care provider or go to the nearest hospital - receiving treatment early, may save your life.
Please share Lucas' Fight with your friends & family, you never know - by helping raise awareness, you may help save a life.


Please have a look at the signs & symptoms to be aware of:
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*Please note, I AM NOT a doctor or health professional. The information on this site has been sourced from other websites. This site is about our son's journey through meningococcal - not anyone else's, if you require any information or medical help please contact your local health professional or hospital. We take no responsibility for advice taken from this story, as I said this is OUR story.
We are not affiliated with any websites, charities or hospitals mentioned on here - we just appreciate the work that they do, more than they will ever know.