Meningococcal left Arthur Long fighting for his life

Meningococcal left Arthur fighting for his life TweetFacebookAN UNKNOWN ILLNESS
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Nathan says itwas a normalSaturday morning whenhis son got sick.

鈥淎rthur was a bit off, he was a bit clingy, but nothing major,鈥?he recalls.鈥淎nd then Saturday afternoon he was still fairly unwell and he had a real high respiratory rate and that triggered me and Carly to get a GP around here. She told us it鈥檚 most likely a virusy-flu type thing, take paracetamol, ibuprofen, he should be fine.鈥?/p>But Arthur kept getting worse and by9pm the family was at the Launceston General Hospital鈥檚 emergency department.

鈥淣ot long after we got to the LGH he fell off a cliff health wise,鈥?Nathan says. 鈥淲hen we got to the LGH, they knew it was meningococcal or some seriously septic bacterial infection.鈥?/p>鈥淲e were at the LGH when they noticed the rash come on, which is the telltale sign of meningococcal,鈥?Carly adds. 鈥淏y the time we left for Melbourne they were pretty certain it was meningococcal and we would get the confirmation over there.鈥?/p>Carly and Nathan said they did not knowmuch about the disease at the time.

鈥淲e still thought everything was going to be fine because they told us he鈥檇 got the big hit of antibiotics at the moment when they could tell that鈥檚 what it was,鈥?Carly says.

But Arthur was critically sick and getting worse.

鈥淭he moment we realised it was really, really bad was when they insisted we call our families at 2am,鈥?Carly recalls.

The couple鈥檚 parents were in Hobart and Legana respectively and they thought they would 鈥渏ust ring them in the morning鈥?when 鈥渢hings settle down a bit鈥?

鈥淎nd one particular nurse indicated that we might not have that time,鈥?Carly says.鈥淲e got really worked up then.

鈥淭hey said he鈥檚 really, really sick and had to get to Melbourne and Nathan was told by the head doctor that he couldn鈥檛 guarantee he鈥檇 be alive by the time we got there.鈥?/p>鈥淚t is a horrible, horrible disease,鈥?Nathan says.鈥淭he worst thing is that by its very nature in its initial stages it appears to be another benign sort of illness then all of a sudden you鈥檙e critically ill and on death鈥檚 door.It鈥檚 incredibly fatal.鈥?/p>EMERGENCYFLIGHT

Arthur was flown by a large team of medical specialists meaning there was no room for either parent who took a commercial flight.

鈥淚t鈥檚 quite a big job moving a really sick patient,鈥?Nathan says. 鈥淗e had two intravenous lines, a range of drugs, and really his life was being supported, he wouldn鈥檛 live without that medical intervention, so moving him from LGH into the ambulance and then the ambulance into the plane, back in an ambulance and back in hospital is a pretty major undertaking and time consuming 鈥?and if something goes wrong in the air, they can do nothing.鈥?/p>鈥淚 was on my phone looking up everything on our way there and we were both pretty distraught,鈥?Carly recalls.鈥淚t was a really hard time for us that first day in Melbourne when his life was on the line and he was going through different surgeries back to back.鈥?/p>But the flight and transfers went smoothly and Arthur arrived at the RCH, still critically ill, unconscious but alive.

鈥淭hey were really worried about moving him as he was in a really critical condition then but he remained stable and it was up to the team at the Royal Children鈥檚 to buy him time to either beat it or not beat it,鈥?Carly recalls.

THE BAD NEWS ROOM

In Melbourne the pair was satdown in 鈥渢he bad news room鈥?with a box of tissues and given an update: surgeons need to performa fasciectomy on Arthur鈥檚 legs, where the skin and the muscle sheath is cutto allow blood flow sothe muscle鈥檚 in Arthur鈥檚 legs didnot die.

鈥淪o it was 鈥榮ign this, sign that鈥?and five minutes later it was 鈥榳e鈥檙e going to have to put him on ECMO鈥? which is basically life support,鈥?Nathan says.

Extracorporeal membrane oxygenation (ECMO) is a treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill baby, providingheart-lung bypass support outside of thebody.

鈥淭he RCH is one of the best in the world in doing that in paediatrics. It鈥檚 a cut through the sternum,鈥?Nathan says.鈥淎tube that goes through and works as your heart outside of your heart,鈥?Carly finishes.

鈥淭hey said 鈥榳hen you go and see him he鈥檚 going to be puffy鈥?and he was, it was pretty horrible but they didn鈥檛 tell us that his chest was open 鈥?that was pretty scary,鈥?Nathan says.

鈥淲hen you walked in and were just like, 鈥業 can鈥檛 believe that鈥檚 my son in there鈥?

鈥淎nd that was when he had the full rash 鈥?they kept telling us it was all time and they wouldn鈥檛 know what the loss would be,鈥?Carly adds.

鈥淎t the time we were like, 鈥榳hy can鈥檛 you just tell us?鈥?nbsp;but now having followed a few other families through this we know the range of loss is very varied,鈥?Nathan says.鈥淭here is a lady who has massive internal organ problems but no external problems, there are people who lose all their legs but keep their arms, all sorts of combinations.鈥?/p>The couple鈥檚 parents flew over that same day, Nathan says.

鈥淲e had to get our parents over because it was 鈥榶ou better come over because we might be saying goodbye鈥? That was the conversation.鈥?/p>Arthur spent the next several days comatose in ICU, hooked up to a myriad of machines and tubes keeping him alive.

Carly: 鈥淲e were devastated that he had to go on the life support.鈥?/p>Nathan: 鈥淚 swore at the surgeon.鈥?/p>Carly: 鈥淲e asked the lovely lady who managed his case if he was likely to come off it, and she really reluctantly gave him a 50:50 chance of coming off it.鈥?/p>Nathan: 鈥淭hey were pretty long days because you go into the ICU ward with all the machines, you couldn鈥檛 get near him.鈥?/p>鈥楢RTHUR NEEDS TO TURN A CORNER鈥?/b>

The first three days were terrible, with Arthur notgetting worse but not getting better. Doctors told the family he needed to 鈥渢urn a corner and start fighting鈥?

Finally, Arthur had a good night and the doctors thought he was starting to turn that corner and show signs of coming out of the coma.

He was still on dialysis but the doctors removed the ECMO and closed up his chest and he went really well. His liver appeared to be working and he produced urine, which is a bigsign his body was improving.

鈥淲e weren鈥檛 really worrying about his limbs as much yet because all the other stuff had to be sorted first,鈥?Carly says. 鈥淭hey couldn’t guarantee that there wasn鈥檛 a lot of long-term damage that would need ongoing dialysis.鈥?/p>Arthur was having moments of waking but was still on a lot of drugs and machines in ICU when his mum was first able to hold him, 10 days after he arrived in Melbourne.

鈥淭hey said it might be really nice for him to try and lay on you and he sort of indicated that he did want that,鈥?she recalls.

鈥淚t was a big ordeal, we had to get two or three people to actually lift him out, sit me on there and have everything on him.

鈥淚t was pretty emotional, he was like a dead weight as well, so I had this large baby and I don鈥檛 know what to do with him.

鈥淗e had moments of being awake, he鈥檇 look up at you and you could start to see that he was there but he was still on so many drugs, thatwas a pretty hard time obviously. It is hard to go back and think of those times.鈥?/p>OUT OF ICU AND ONTO THE NEXT CHALLENGE

Arthur left intensive care soon after that but his health struggles continued as he was weaned of the the strong painkiller hydromorphone, a process of withdrawal that can be much worse for children.

鈥淎part from the three or four days when Arthur was critical, which was horrific, the drug withdrawal stage was the second worse part of the experience,鈥?Nathan says. 鈥淚t was hard to see him like it,鈥?Carly added.

鈥淗e had a nasogastric tube and they鈥檇 put some food in and he鈥檇 vomit it up, so he was vomiting and he was having these drug withdrawals, you couldn鈥檛 touch him because he鈥檇 scream,鈥?Nathan says.

Despite not havingmeningococcal meningitis 鈥?nbsp;an infection of the lining around the brain and spinal cord鈥?nbsp;the parents were worried about brain damage, particularly when Arthur started having unstructured movements, like he was jiggling or dancing.

鈥淓veryone kept telling me to stop doing it, but I was reading every little possible thing,鈥?Carly says. 鈥淎fter reading all the stories, I kept asking them in the early stages at what point would we know that his brain hadn鈥檛 been affected.

鈥淚 was worried that all the drugs he鈥檇 been on had actually given him some type of brain injury because that was our biggest fear that it would have affected his brain and his personality and that he wouldn鈥檛 be the same little boy that we had before.鈥?/p>Thankfully a top neurologist who specialised in movement disorders reassured the family that it was just anxiety causing the involuntary movements.

鈥淭hey kept reassuring us that our best indication of [brain] damage is what he鈥檚 like when he wakes up, so once he woke up and looked at us and started saying 鈥榤um鈥?and 鈥榙ad鈥? we had a bit of reassurance that nothing had happened there.

鈥淥nce he started remembering our names and learning new things and saying new words, that was really reassuring for us. His language developed once he woke up and started interacting with us again.鈥?/p>HAPPY 2nd BIRTHDAY ARTHUR

On May 1, Arthur had his second birthday in hospital.

He was past the worst ofthe danger buthis feet and most of the digits on his right hand had died as menigoccocal restricts blood and oxygen circulation.

In the early stages it looked like Arthur would have his feet and lower leg amputated midway through his shinbone but theorthopaedic surgeon was keen to hold out for as long as possible to get as much length in the leg.

鈥淎rthur keep on healing further and further down and eventually they ended up going through the ankle, which is a win for little kids, or anyone who is growing, because it reduces the chances of follow up surgeries,鈥?Nathan says.

鈥淭hey could have amputated once we knew he鈥檇 lost his feet and got us home a lot quicker but hopefully this will make it so he doesn鈥檛 have follow up surgery nearly every year,鈥?Carly adds.

鈥淚f you have it higher and you鈥檙e growing they have to straighten out the stump nearly every one to two years. So that鈥檚 a lot of surgeries, a lot of time off your prosthetic legs, so for him, fingers crossed, that will be it. Obviously he鈥檚 still growing so he鈥檒l get new legs every year but he won鈥檛 have to have surgery to do that.鈥?/p>Arthur, who was in bed and unable to move properly for three months, spent a lot of time with thephysiotherapist toget him to sit up and hold his own weight.

鈥淥nce he started getting better he started getting better really quickly,鈥?Carlysays.

鈥榊OUR FEET GOT SICK AND DIDN鈥橳 GET BETTER鈥?/b>

鈥淲e were worried about how he would feel when he woke up from the anesthetic and they鈥檇 amputated his feet,鈥?Carly says.鈥淪o before they did that we started talking about how his feet got sick and they didn鈥檛 get better so his feet had to go and he鈥檇 be getting new feet. He鈥檚 on board with it now.鈥?/p>鈥淗e鈥檚 never been frustrated,鈥?Nathan adds.

Carly continues: 鈥淚 think he knew he was sick and he couldn鈥檛 do things. I was quite worried that we were going to take him outside and see kids running, playing, doing things and he鈥檇 wouldn鈥檛 like it, but he loved it. He loved going and watching kids playing outside. He just did what he could do and once he started what he calls his walking, he just wants to crawl and walk.鈥?/p>Arthur loves diggers and has picked some fabric with diggers on it that will be used in the construction of his prosthetic legs.

Carly says the type of prosthetic feet willchange a lot as he gets older.

鈥淭hey don鈥檛 have a lot of movement in the ankle until about five because it鈥檚 not as easy for little kids to learn to balance. Fingers crossed, we鈥檝e been told by the prosthesis team that you might be surprised, he might put them on and just go. Sometimes kids just naturally go.

鈥淚t will be great to see him up and walking around again. He鈥檚 a little bit limited at the moment so this will be the difference that makes things a little easier.鈥?/p>So does Arthur feel different from other kids? Has he asked about his feet or hands?

鈥淗e just gets on with it,鈥?Carly says. 鈥淗e鈥檚 just always really accepted it. I think it is just his age and it might be maybe when he鈥檚 older he鈥檒l question it.

鈥淗e understands that they got sick, they didn鈥檛 get better and he will get some new feet. We never really spoke to him about his right hand because he鈥檚 lost two fingers and a bit of his tip and that much of his little finger and they鈥檙e talking about some revision surgery that we might get done on that hand later to separate it a little bit. But for some reason he鈥檚 never really asked about his hand. He鈥檚 said funny things to us like his hand is beautiful.鈥?/p>VACCINATION AWARENESS

Part of telling their story is getting the awareness of vaccinations, particularly the different strains of meningococcal, and that parents reading Arthur鈥檚 story will investigate.

鈥淚t鈥檚 vaccine preventable but it was vaccines that we weren鈥檛 told about at all,鈥?Carly says.鈥淣o one ever mentioned it, so you go through these stages of being a little angry about that. We hadn鈥檛 heard that there were different strains of meningococcalso it鈥檚 mind boggling that if he鈥檇 had that shot this wouldn鈥檛 have happened to him.鈥?/p>Nathan adds: 鈥淚 couldn鈥檛 believe that the same health system that saved Arthur鈥檚 life, is the same health system that didn鈥檛 tell us 鈥?if Arthur had have had one more vaccination he wouldn鈥檛 have got sick, one more jab.If the doctor mentioned it, you鈥檇 be like, 鈥榶eah of course, of course鈥?鈥?/p>They urged all families to make sure they children are fully immunised.

THE POSITIVES

Nathan says it was a horrific ordeal but, in balance, there has been more positives than negatives.

鈥淗e鈥檚 incredibly unlucky, Arthur, to contract meningococcal, you鈥檙e pretty unlucky, but we got him to hospital in a timely fashion and once he got to hospital, the care he received was perfect, impeccable, it couldn鈥檛 have been better.I can鈥檛 remember the doctor鈥檚 name but he was straight onto it, line in, fluids in, antibiotics in, so that was incredible. Then they flew the doctor up from Hobart and that whole process ran like clockwork, then he鈥檚 gone to one of the best paediatric hospitals in the world and received world class care, and for how sick he was, systemically, Arthur鈥檚 whole body had failed basically and he was only being kept alive through our wonderful hospital and doctors and nurses, and then his level of amputation was so low and he鈥檚 got two good, well not great at the moment but they will be, two really good hands, he鈥檚 got no brain damage, he鈥檚 got no ongoing internal issues, he lost a spleen but of all the organs, if you鈥檙e going to lose one, that鈥檚 the best. I think as well. That hospital [RCH] is incredible. Incredible people work there. The immediate care he received here would had to have been world class.

鈥淭here鈥檚 been hundreds and hundreds of awesome times,鈥?Nathan says.鈥淟ike taking him out of his hospital room for the first time. Even Carly having him on her was a massive thing, it was big deal at the time. Carly managed to get him on her lap and we got Carly in a wheelchair out of the room onto a nice window. He hated it too getting him there, but when we got him there he saw the tram and he was so happy and the sun was on him, that was a pretty nice moment.鈥?/p>THANKS

The family also wants to thank the many people who offered support or thoughts and prayers.

鈥淲e were absolutely floored by the support we got in the early days by friends who did fundraisers and people who are still doing it now,鈥?Carly says.

鈥淲e are constantly asked by people who have only met Arthur once if we have pages, which we don鈥檛 because we鈥檙e not dire and don鈥檛 feel we need GoFundMe or anything like that but we鈥檙e lucky we have the family and friends that we do who went and did it anyway.鈥?/p>MENINGOCOCCAL FACTS

Meningococcal disease is a medical emergency. It can kill within hours, so early diagnosis and treatment is vital.Do not wait for the purple rash to appear as that is a critical stage of the disease.Symptom includefever (which may not go down with medication),nausea or vomiting,lack of energy,tiredness or drowsiness,confusion or disorientation,dizziness,irritability or agitation,a sore throatBe aware there are two different sets of symptoms, depending on whether it takes the form ofmeningitisorsepticaemia(blood poisoning).Meningitis only: backache,stiff or painful neck,sensitivity to light,twitching or convulsionsSepticaemia only: fever with cold hands and feet,cold shivers,pain in muscles or joints, pain in chest or abdomen, pale, grey or blotchy skin,rapid breathing, diarrhoea,a rash, which may start off as a spot, scratch mark or blister, as a faint pink rash or as red or purple pinpricks on the skin, then develop into the distinctive purple bruising.Meningococcal is caused by bacteria (not by a virus)and transmitted via mucus. Meningococcal bacteria can live harmlessly in our throat and nose. Around 20per cent of people will be carrying these bacteria at any one time without ever becoming illMeningococcal bacteria are not easily spread from person to person and the bacteria do not survive well outside the human body.The bacteria are passed between people in the secretions from the back of the nose and throat. This generally requires close and prolonged contact with a person carrying the bacteria who is usually completely well.Meningococcal bacteria are not easily spread by sharing drinks, food or cigarettes.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Meningococcal disease can strike babies, children and adults 鈥?anywhere, at any time. Those most at risk are: 鈥?Babies and children up to the age of 5 years鈥?this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys). 鈥?nbsp; Teenagers and young adults from 15 to 24 years鈥?primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.Source:Meningococcal .