Oh yeah. Hirschsprung’s is for life damnit.

Friday, 12th June 10pm: I’m in my bed, eating the hell out of a packet of Lindor Balls.  I just got out of the shower.  A long shower into which I took my trés classy bourbon-in-a-can and sat on the floor.  I didn’t cry, but I could have.

This week broke my baby.

{If you’re a new reader, and not sure about Nixon’s Hirschsprung’s Disease, these posts will fill you in > Nixon and Hirschsprung’s Disease, Last Night’s Hospital Dinner}.

There were a couple of factors contributing to our slow admission that there was something seriously wrong with Nixie this week;

1. He is teething hard out.  His two year molars are mucking around and I blamed his diarrhoea and general lethargy and grumpiness on this.
2. Dave, Ethan and I were literally walloped with what we can only imagine was food poisoning on Monday night.  The.  Worst.  Thing.  Ever.  You don’t need details.  So, as you would, we assumed Nix had the same bug. 

Wrong on both counts.  

When he woke up in vomit on Wednesday morning and actually couldn’t do anything but lay on his side, barely able to even speak we rushed off to Starship, with my bags packed.  I knew we would be staying and I instantly knew that he had enterocolitis – a Hirschsprung’s Kid’s nemesis.  

After failing him for a week, I finally got something right.  Surgeons from his operation last year came down to assess him in the ER and he was admitted fairly quickly.  Not that we settled on the ward quickly.  It took a gargantuan EIGHT HOURS to achieve that feat.  We arrived at the ER at 8am, there was no-one else waiting and we were triaged and seen by the doctor very quickly.  Once it was established Nix was going to need IV antibiotics and fluids the shit hit the fan.

Nix has good veins but also a good layer of fat hiding his veins.  The doctor got a line in on first attempt after not too much hassle.  Nix didn’t like it but that was to be expected.  An hour or so into his fluid replacement a nurse arrived to administer his first dose of antibiotics.  She noticed the IV had tissued and Nixon’s arm was rapidly swelling like a balloon because it was filled with maintenance fluids.  Great.

Second attempt.  Same doctor pincushions him in three separate spots, puts line in, pulls line out.  Nix is being restrained by both Dave and I and two nurses while a play therapist tries to interest him in Thomas the Fucking Tank Engine while his eyes are rolling back in his head and he is screaming and thrashing like he’s possessed by the devil.  In the middle of this another doctor runs in and says “lets give him some nitrous and see how that helps calm him down”.

Slightly better result.  Nix isn’t speaking in tongues at least, same doctor gets line in and rapidly disappears.  Nurse goes to administer antibiotics and can’t.  Again.  Doctor no-where to be found, new doctor takes over.  End result achieved by rolling Nixon in a sheet and me pretty much lying on top of him crying my eyes out with Dave doing the same on his lower half and two nurses assisting.  Play therapist gone back to playing, because quite frankly, this has gone WAY past the point of iPad intervention.

Absolutely the worst experience of my entire life, and I’m sure Nixon’s.  Patients cannot go up to a ward without an IV in, and Nix needed those antibiotics mainlined quickly.  X-rays earlier in the day showed his bowel was badly swollen, confirming Hirschsprung enterocolitis – a life-threatening complication of Hirschsprung disease resulting in a grossly enlarged colon, often followed by sepsis and shock. 

This awful, awful series of events had rendered my sick, exhausted boy into a terrified little puddle, clinging to me for dear life.  Signs of his severe anxiety grew over the course of our 3 day stay, culminating in diaper changes becoming a two man job as Nixon’s severe, thrashing, physical protests made it impossible for ether Dave or I to complete this once simple task on our own.  When his bowel movements were as frequent as every 10 minutes you can imagine how emotionally and physically draining this was for all three of us.  

The four hourly obs by the nurses elicited the same response.  So does oral meds.  You actually can’t even imagine the state twice daily rectal washouts leaves Nix in.  Seeing my once bullet-proof-happy guy go through multiple hysteric episodes each day, is heartbreaking.  I don’t know how to fix it.

We returned home this afternoon, with a shattered little boy.  The visible distention in his belly is gone as well as other signs of untreated enter0colitis (which are too gross to bore you with!), so now it’s time to heal.  

My Mum and Dave, who were both ill themselves, were amazing last week, holding things together at home for Ethan (who was also unwell!) and keeping things as normal as possible for all of us.  I’m sure the dogs were very happy with their respite from Nixon, who loves them so much that he actually terrorizes them with the ferocity of his hugs, too bad suckers, he’s back.

It’s now Saturday at lunchtime and the promise of being at home has been tarnished by a morning of yelling and bitching at each other, frustration, hysterics and terrible behaviour from Nixon (totally understandable, but so hard to deal with) and just trying to get back on an even keel when it feels like we’ve lost an entire week.  Nix slept all night – so did I, and is showing signs of improvement today.  The nurse on the surgical ward sent us home with exactly the right amount of supplies for today and Sunday, not a ml of saline to spare and the home help nurse said the supplies we need are out of stock so we won’t receive them until mid-week.  That’s the next battle.  Just keep swimming. just keep swimming………

Thank you for all of your love, it is so appreciated xx

 

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