It’s hard to believe that after 3 bouts of sickness and a call to the GP resulted in one week later, our 10-year-old having surgery, his organs failing his fragile body, and currently in a wheelchair unable to support his own body weight.
It all started Tuesday evening when Josh violently vomited after an evening with friends. The early hours of Wednesday morning, he was sick twice more and then for the rest of the week was complaining of mild tummy aches. As Noro Virus is only supposed to last 48 hours, I called the doctor the third day he claimed he “didn’t feel right” and was rudely told by the receptionist “oh golly, do not bring him in here, it will spread like wildfire…” Reluctantly she put me through to the on-call doctor who told me that Noro Virus was going around and not to worry.
I have massive respect for our NHS staff, and so thought nothing of it.
By Thursday night he was unable to open his bowels but as he hadn’t eaten since Wednesday morning, we weren’t surprised he didn’t need to go and just kept a close eye on him. One minute he was fine, then he was slumped on the sofa again. Saturday evening he was looking a lot brighter, seemed more relaxed and asked if we could go to a family party. Reluctantly we agreed we would “pop” in so he didn’t overdo things, but not long after arriving he went as white as a sheet and was heaving uncontrollably. We left immediately and ran him a warm bubble bath prepping for an early night thinking he would be back to himself in no time.
As Josh is Autistic we put this down to a combination of the stress of the social situation at the party, the tail end of a bug and the fact that he is now probably constipated.
On Sunday, I went into his room to find him having a bit of a meltdown; rocking on his bed and hitting his head. This wasn’t uncommon in high-stress situations but I just thought enough is enough and took him to A&E as his symptoms (although they weren’t getting any worse) certainly weren’t getting any better. Plus we were due to go on holiday in two days time, so we thought it a good idea to get some laxatives.
Unfortunately, in the early hours of Monday morning, he was immediately taken into Paediatrics with suspected gastroenteritis, not Noro Virus as originally assumed, or constipation like the dietician had suggested. It’s an easy mistake to make faced with the symptoms. He had a blood test and immediately it was evident he was fighting a severe infection due to his dangerously high white blood cell count. Consequently, they didn’t know what was causing it.
He was admitted for observation, put on oxygen, placed on a drip and given IV antibiotics to fight whatever it was making him ill. Throughout the night he was in constant observation and was running a very high temperature. His blood pressure was through the roof.
Early morning, the consultant came and informed us there was something seriously wrong with his blood cell count as it was so erratic. Along with concern about an unidentified rash that had appeared on his cheeks, chest and upper thighs overnight.
As parents, it’s hard to think about how you would feel if this was your child. I always look at parents who have severely poorly children and wonder how they do it. But you honestly go into auto-pilot.
At 10am he was taken into surgery for an investigative laparoscopy but we had no idea what was going on because the surgeons didn’t know the reason for his severe tummy pain, loss of appetite, sickness and blood cell count. 3 1/2 hours later we found out Josh’s appendix was 3 times its standard size and had perforated.
Not only this, but he had intestinal malrotation and volvulus. Put simply, his intestine had cut off the blood flow to his bowel as it was being squashed from the swelling of his appendix, and his bowel had twisted and become inflamed because of the rupture. To think that was bad enough, due to the toxic fluid leaking from his appendix he developed peritonitis; inflammation of the abdominal wall and had inflammation of the pancreas.
To treat his condition, a laparoscopy, unfortunately, wasn’t suitable and he required a large 5″ open surgery incision to facilitate a tube through his tummy draining the infection and abscess into a bag to prevent further collections of bacteria swarming in his little body. Because of the nature of his condition he was susceptible to a high risk of Septicaemia and had to be monitored closely, with a high level of antibiotics and pain killers.
After this ordeal, witnessing Josh totally helpless & so gravely ill, realising that I was going to be away from Finn & Austyn for goodness knows how long and then struggling to stay brave for everyone else, there are two things I never want to hear ever again;
1. The Consultant asked me why I didn’t bring him into the hospital sooner, as if I had done, all of this could have been prevented, and;
2. Finding out that if we had got on that plane on Tuesday, the pressure from the cabin could have caused his appendix to physically “explode” and his organs to become infected, swell, perforate and the most devastatingly scary news;
He’s a lucky boy. Malrotation, volvulus and peritonitis are all life-threatening conditions in their own right. If this had gone on any longer he could have contracted septicemia or developed a ruptured pancreas.
Being told your child could have died, witnessing them so ill they can barely move and realising there is nothing you can do is absolute hell, and it all happened so quickly. Going through all of that and things still going from bad to worse leaves you numb. So when we found out the following day that he had a significantly larger abscess on his pancreas and ileus paralysis – which basically means his bowel had stopped functioning, tore his (and our) world apart.
The following day, further news came. It wasn’t good. Josh’s abdomen was swelling and he was throwing up blood and green bile uncontrollably. These symptoms went on for 36 hours and after no sign of improvement we had to go for an X-ray (and later a scan) to find out if there was another infection spreading or worse still – does he have Sepsis Shock – that is all that kept going through my mind.
At this point, he had now eaten absolutely nothing for 8 days and had lost well over 1 1/2 stone in weight – a huge amount of weight he didn’t have to lose in the first place.
After 5 days hospitalised, on a constant drip and 6 antibiotics 5 times a day, his bowel was back to 60% function, but he was unable to digest anything properly. Due to this, the specialists had to put him on additional medication that would cause spasms, and contraction-like pains to try and get it back to normal and take down the swelling.
There’s nothing worse than seeing your child in pain and knowing there is nothing you can do to help, except cuddle them and tell them everything will be alright. Especially when you are sat there not really knowing if everything is going to be alright.
Finally, there started to be light at the end of the tunnel. The tube from his tummy was removed on Saturday morning but the consultant needed to monitor the abscess on his pancreas for swelling as his stomach had become distended. Despite this, it’s all a step in the right direction. It’s now been 10 days since Josh has eaten (and kept anything solid down) – just getting out of bed to go to the toilet is enough to put him to sleep for a few hours. His bones are protruding through his almost opaque skin and he can’t move without us physically lifting his arms and legs.
Just having his blood pressure checked has him screaming in pain as his joints are beginning to fuse from lack of movement. The strength of the medication he is on results in him being in and out of consciousness for most of the day, but at least it gives me time to cry without him seeing me in such a state. And as parents that’s our job, isn’t it? To stay strong for them.
A few days later, good news comes. Josh was out of pain, the sickness had temporarily stopped, his bowel was slowly returning to normal function and the drainage tube had been removed. We were ecstatic at the good news, but then it all came crashing down the following day when we found out he had an infection. Due to the treatment he has required, his veins had collapsed from all the medication via IV. Yet again, more medication is required and his arm drained to prevent blood clots which he was now on high alert for.
Luckily he had his first good nights sleep that night, but a scan the following morning revealed he had low kidney function and a bladder infection with blood clots being present.
That night, I asked a nurse to explain to me in a way I could understand what is going on. I was fed up with the medical jargon, however, I wasn’t prepared for what was about to come. Being told the catastrophic news that his body wasn’t responding to medication and the multiple infections he had, it is highly likely his body will “shut down” organs one by one to fight the post-surgery infection developed from appendicitis, and at the moment, they were unsure of the long term outcome.
As parents, we have never felt so powerless and with a 4-month-old baby and our other son at home to also care for, it was the hardest juggling we’ve ever had to do. I can’t even begin to describe the heartache, the pain and the helplessness.
Slowly, he did start to respond to medication and was gradually getting better. We were discharged with an abundance of medication and a strict routine. He was ecstatic to be going home; just to his own bed. But I can’t explain what it does to you as a parent, seeing your 10-year-old covered in scars, stitches and plasters; too weak to do anything himself and numerous cannulas he has had to have, as well as pressure strips across his arms to prevent further swelling is heart-wrenching. He has always been active, bouncing around somewhere or another doing Parkour. Yet now, he’s blank, non-verbal, and he’s going through the motions of simply existing as he can’t walk further than 2-3 steps before collapsing.
Once discharged we aren’t even home 24 hours, and we are back on the ward. This time with both internal and external infections from open surgery; the surgeon ran a number of tests and scans to confirm that the operations were successful but said that Josh’s appendix was in a horrendous state. Above all, it had fused to his small intestine. Due to this, the consultant tried to remove as much of the appendix as possible, but a small amount of tissue couldn’t be removed without invasive internal surgery. Consequently, they didn’t want to do this due to other organs being affected. More importantly, it would have been too much for his tiny malnourished body to fight when he was in such a weak state.
Despite his suffering (from an organ the body doesn’t even bloody need) we still need to contact the hospital every 3 hours updating them of his general health, while keeping him in complete isolation to avoid further infection.
It didn’t help that he was so frail and so physically and emotionally drained… Not only coming to terms with what’s happened but also processing everything that has happened as an Autistic child. It’s a long road to recovery, a high risk of further infection and a chance of having to go back into theatre, but we are crossing everything and hoping Josh will fight everything being thrown at him.
********** UPDATE ONE YEAR ON **********
On the 27th March 2016 we took Josh to the hospital with what we thought was Gastroenteritis…
After having major surgery, his veins started collapsing, he then had rapid weight loss & muscle mass disintegration (which we thought was bad enough) today, a year ago, in 35 minutes exactly, was the day we were told that his organs were failing… I’ll never forget his tiny frail yellow body convulsing & breathing erratically & there was nothing we could do. It’s a parent’s worse nightmare as we expected the worst. We thought he had Sepsis.
It still kills me every time I think back to then. But now I realise that Josh is so much stronger and so much braver than both his Dad and I could ever be. In a weird way, I know he will always be ok. He’s a true fighter, he won’t ever give up.
We are both so thankful to have him.
Today, he’s now fighting fit, managed to integrate back into school after such a long time off and he’s a triple world record holder in Parkour and is already starting to be THAT soon-to-be teenager that skulks around moaning about everything, irritating the whole family, grunting in response to questions and rolling his eyes as soon as you try to engage in any form of communication with the little sod.
But do you know what? We wouldn’t want it any other way and his letter to those who looked after him just melted by heart.