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.

Mummy Blogger New Zealand

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

 

14 months Old|Hello Nixon 6 Weeks Post-Op

Baby Boy

Same old, same old – how time flys – yadda yadda, but really?  Six weeks? 

Thank you so much for all of your kind messages and concern it has meant so much to us!  The good news is…………..Nixon is doing amazingly well!  His little bowel that was obviously SO excited about being able to poop has calmed itself {thank god!} so we are no longer dealing with 7 dirty nappies before lunchtime – he seems to have a regular routine now, twice a day which is pretty normal I would say!? – I think?  

His hideous, bleeding nappy rash is also entirely gone and really, my only concern is that post-op he hasn’t gained any weight.  Zero grams.  He’s still sitting at 98th percentile however………….so, I guess there’s not too much to worry about lol.

The Hirschsprungs diagnosis still seems completely surreal to me, even more so since his excellent response to the pull-through surgery.  We are now fully immersed in the normal trials, tribulations and JOY of having a 14 month old toddler ruling the house – and believe me, the tribulations are many.  

This kid doesn’t take no for an answer, he laughs in the face of NO and carries on his merry way.  There is so much I want to remember about this age as Nixie’s rate of growth and change is incredible right now;

  • I love his little voice, our house is constantly filled with babble – ‘shooz’ – shoes, this means I want to go outside Mum, ‘huss’ – hush, this means shut the hell up you barking a-holes, ‘dish’ – Dash, barking a-hole #3, plus eyes, ears, up, door, nose, mama, daddad, Nana, yum, uh-oh, digger, dump truck………so many cute little words
  • I HATE the obsession with one of my surfing trophies, he pulls it off the wall approx 173 times a day, brings it to me and says NO NO
  • I love how he pulls every book off his bookshelf and sits on top of the mountain and reads them all one by one
  • I love watching him learn new tricks {like climbing up on the couches!}, when he succeeds he sits back, satisfied with a grin on his face

Life is pretty wicked aye?  Feeling quite grateful right now x

 

Last night’s Hospital Dinner…..

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Today is Thursday, which means we survived Wednesday night, the worst so far. 
Nixon’s pull-through operation (so named because they surgically pull healthy intestine down and rejoin everything after removing the diseased segment) went well, although it took 6 hours rather than the 3-4 that was expected!  Stressy.  Bubba’s bowel was in worse shape than his surgeon had anticipated, creating more work in theatre.
So the past few days have been spent managing pain and administering a multitude of medicines orally, intravenously and through his epidural, also managing his ‘output’ levels though his catheter and nappies.  He has been doing so well and managing like a champ.  As his surgeon reminded us, he has been through major surgery that would render any adult an absolute puddle of jelly.  His only outward scars are three laparoscopic incisions through which they worked on the top bowel segments, they then completed the remaining work through his bottom.  Ow.
Lets be honest though, last night I lost the plot.  Yesterday he was switched exclusively to oral morphine and tramadol to see if he would be able to manage without the epidural (and in turn the catheter).  One of the two made Nix go mental.  He was unable to sleep until 10.30pm after being awake the whole day.  He got so frantic he wrapped his epidural cable around his neck before I was able to get it untangled.  Then his catheter connector snapped and the nurse taped the end of the tube inside his nappy.  15 minutes later Nix took control and simply finished the job, ripping the balloon tipped catheter completely out!
#nonixonno!
So I cried and despaired and text Dave to say I didn’t know how much more I could take.  I feel like a failure but I hadn’t realized how much of a mental respite nap times are; even more so when Nix and I are confined to a small hospital room.
We ended up co-sleeping for the first time ever as an older and wiser nurse suggested he may just calm down if we stay as close as possible.  I had been trying this over the past two days by climbing into the crib but it was just too small to stay there for any period of time, so a full size bed was brought in and we got to sleep before 11pm.  He was on 2 hourly observations but we managed to resettle each time and eventually slept through until Dave arrived at 7am.
The absolute best thing that has happened this week?  Nixon had black beans in his vege mash for dinner last night and this morning, out came some black beans! This is seriously amazing.  Never is his life has he had a bowel movement so quickly and with so little effort. I had so many doubts about this operation, I just thank god that we have seen positive results so quickly

Oh. And baby was discharged this afternoon! We are home to heal.

Thank you, thank you all so much for your lovely messages, heart emoticons {tee hee} and prayers.  We appreciated it so much xx

hospital-mummy-blog-nz

secura:  $32 bum cream – our baby has never had poo sit on his bum as his bowel movements have been controlled by suppositories or wash-outs for much of his short life.  this stuff, prescribed at the hospital, is apparently the golden ticket to protecting his skin, which at 13 months old is prone to his first dose of nappy rash.

huawei mobile wifi from 2°:  my lifesaver.  you get 1 hours worth of free wifi per day at the hospital.  1 hour.  this little black box was worth it’s weight in gold.  $99 and a pocket sized modem that enabled dave to continue to work from nixie’s hospital room and let me remain at least somewhat connected to the outside world for the 5 days we spent ‘inside’ lol.

medical obs: oh how nix hates the routine obs, particularly the O2 sensor and getting his blood pressure checked every 2 hours.  he can spot a nurse at 20 paces and gear up to beat her off so fast.

remove: there is this magical solution called remove that ‘removes’ sticky sticky adhesive tape with no residue or pain!  a miracle on baby skin.  man and medicine do some cool shit.

books:  it’s taking me a long time to read a book at the moment, but i did read over these past few days and The Invention of Wings is a damn good book.  so is any book about trucks, diggers and tractors which distracts nix from diaper changes, which are now alarmingly frequent.  yay?

 

So, hey……It’s Monday!

………………and we’re not at Starship, and Nix is not having his op today.  Remember in my last post about poop {sorry about all the poop posts, it pretty much rules our lives at the moment!} I mentioned 2-5 massive bouts of diarrhea per day?  Well, turns out that was courtesy of rotavirus, not a side affect of Bub’s large intestine getting plunged with cameras and biopsy equipment from end to end.  Phew, not.

We spent Wednesday night at Starship last week to monitor Nixon after 5 days of the virus depleting him of everything he ate and drank; plus side – at least there was one right? – we had our own room because poohs and spews make for a very contagious baby.  And Mumma.  And big brother.  FML.

So, no pull through surgery today, it’s too risky for a number of reasons, so at least little boy gets a chance to recover from the past couple of weeks and enjoy his first birthday in relative normality!  The surgeon is away in July so we will be heading back to Starship at the beginning of August to get the show on the road.

I am so ready for a normal week.  So normal in fact that Nix and I are going to do the grocery shopping as soon as he wakes from his nap and I’m kinda looking forward to it.  We haven’t left the house by ourselves, for just normal errand stuff in weeks.  Time to get back on track, and get ready to celebrate Nixon’s first birthday in 11 days!!!

waking_up_in_starship
Sunrise from our room at Starship Children’s Hospital

Nixon and Hirschsprungs Disease | Where we’re at

We were in our GP’s office today, and as he turned his monitor around to show me some test results I saw the words in bold, accented in fluorescent yellow; HIRSCHSPRUNGS CONFIRMED.
I already knew this of course.  We ‘knew’ a month ago when the surgeon called and said “Nixon has Hirschsprungs Disease”.  We knew last Monday after baby’s second round of biopsies failed to show ganglionic cells where they should be in his lower bowel.   But I hadn’t seen it in black and white and hence, I don’t really think I had felt it.
So.  Nixon has Hirschsprungs Disease.
Basically, Hirschsprungs is a congenital disease (meaning it was present prior to birth) resulting in a lack of nerve cells in some or all of the large intestine. Nerves are essential in causing muscles to relax and contract, so an absence of ganglionic cells results in a large intestine that can’t move waste down the line.
The only fix; surgery.
Many of you have followed my pregnancy and our lives over this past year, you may remember that Nix had a pretty traumatic birth, that even at 10 lb 2 oz / 4.52 kg he was hospitalized with Failure to thrive, he struggled to feed and had a hugely distended belly. But, he did pass meconium after birth.  I had never given any thought as to why every medical professional asks the question of every baby, “did they pass meconium?”.  I now know that failure to do so is an early indicator of Hirschsprungs.
So Nix flew under the radar for about 4 months until we started experimenting with solids.  This became the season of month long stretches between bowel motions.  He was never in pain or seemed bothered, but all of the usual remedies failed to help him.  The only thing that would get him to poo was a suppository.
Fast forward to today, and my poor baby has chronic diarrhea multiple times each day, between 3 and 5 huge blowouts.  I’m about at the end of my rope with exhaustion and worry and his pull-through surgery is scheduled for Monday.  This is where they will remove the diseased portion of his large intestine and reconnect the plumbing, hopefully without the need for a colostomy.
Holy shit.

WIDRN | One of us is sleeping!

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So we are waiting to be discharged after our third day here at Starship.  Yes, it is taking an age, but one of the lovely cleaners figured out that a breastfeeding mummy really needs an armchair in her room and she made it happen.  Right away.  Praise that women and her good sense!
So, baby boy is napping hard out on my lap for the second time today and that is just a minor miracle after a sleep strike yesterday from 10am to 1am. 
I can wait on doctors all day long if my bubba is sleeping and comfortable.