Surgery, surgery, surgery

Ever since Leo had a stoma put in, it was on the cards that the stoma would be coming out. Our understanding was that it could happen anytime from about six weeks old onwards, and that the preferred option was to remove it sooner rather than later. Besides that, we were kind-of flying blind in terms of when the surgery would be, but we were very much looking forward to being stoma free!

tl;dr

After three rounds of surgery and a two week stay in hospital, Leo’s stoma is still in, and he now has a central line to boot. But at least he’s back home!

Leo’s surgery ended up being booked for Friday the 14th of March (my Dad’s birthday!). He was the first case on the list, which meant we had to be at the Royal Children’s hospital bright and early. Though there was a little delay, it wasn’t long before Leo was taken into theatre, so Kristy and I went off to find a coffee and wait anxiously for him to come out.

Round One

Thankfully, the surgery went as well as it could have, and after about three hours, Leo came out awake and bag free. It was a beautiful moment! Since he wasn’t sedated, he went to HDU overnight instead of PICU, where Kristy stayed with him. Sadly though, this is where things started going wrong.

The first problem was his IV line, which only a few hours after surgery, Kristy noticed was wet. They’re supposed to last for up to about three days, but Leo’s had failed only a few hours after coming out of theatre. Worse still, the nurses didn’t have any luck getting it back in, and as he was supposed to be nil-by-mouth for 24 hours post surgery, he was at risk of becoming dehydrated. So, after consulting with the surgeon, the doctor on shift told us to try giving him a small feed.

Unsurprisingly, Leo was very happy to be fed – it was tough to cut him off but given that he wasn’t really supposed to be eating yet, we didn’t have much choice. Also, if he wasn’t going to get a line put back in, it meant that he’d need to keep feeding in order to stay hydrated, and it was clear that the surgeon was hesitant to put much pressure on his stomach. It was a nervous wait.

Three hours later, it was time for him to feed again. We were a little surprised when the nurse recommended a “full feed”, given that we’d seen Leo down a 180ml bottle only a few nights before surgery. When we told her that, she seemed a little surprised too; in her mind, a “full feed” was only about 70ml. So instead, she told us to feed him from one side only, which we did. In retrospect, we probably should have had a look at his tummy before feeding him, as when we went to change his nappy afterwards, it was clear that his gut had started to swell. But, we were following instructions, and no-one seemed too concerned at that point – some swelling was to be expected post surgery, and his stomach was still very soft, so we stayed the course.

The next day, Kristy and Leo moved out of HDU and up to the ward, where the routine of feeding every three hours continued. Everyone was waiting for a dirty nappy, but as the days went on and no dirty nappies came, people started getting a bit nervous. His gut continued to swell, and worse, it started getting hard, which really had people worried.

I stayed in overnight with Leo on Monday to give Kristy a break and a chance for a sleep in our own bed. It was a tough stint, not made any easier since they decided that they should put a cannula back in to start IV feeds. First the registrar on shift tried and failed. Next it was the doctor’s turn; she tried, and she too failed. So, they called up the doctor on shift from HDU downstairs; she too couldn’t get the cannula in. Finally, at the point where failure was no longer an option, they had to call a paediatric anaesthetist to come in from home for his bite of the cherry. Finally, about four hours after trying the first time, his line was put in successfully, and they started giving him IV fluids. He was back to nil by mouth.

By Wednesday, his gut was so swollen that he could no longer lie flat on his back. What’s more, his intestine was now taking up so much room in his body that it was starting to crush his lungs, which caused his breathing to become shallow, and his blood oxygen saturation started to drop. The surgeons had no choice but to open him back up.

Round Two

The surgeon’s opinion was that Leo’s best option was to put the stoma back in. It was difficult news to hear; after one operation and five days of recovery, we didn’t want to contemplate going back to square one. But what choice did we have? Leo was really suffering. So back into surgery he went, and Kristy and I went off to wait.

Two-or-so hours later, the surgeons came and found us waiting in the parent’s room, and their news was very positive. Simply opening up Leo’s gut let most of the gas out, which immediately reduced the swelling. What’s more – to over simplify it – they found a kink in his small intestine, which they removed, and then saw that there was now a clear pathway into the colon. So, they felt as though putting the stoma back in was unnecessary, and instead they sewed him back up, kept him sedated, and instructed everyone to “take it very slowly”.

Given that he was sedated and had a breathing tube, he had to go in to PICU for the night. We weren’t too upset by this, as it meant he had his own highly trained dedicated nurse attending to him 24×7. What better way could there be to recover? It also meant that we didn’t have to stay in overnight, so we both came home and had a night in our own bed. Things were looking up!

On Thursday, his breathing tube was removed, and not long after that, his care was stepped down a notch by sending him into HDU. He and Kristy stayed in overnight, and for the most part, things seemed to be going ok; once again, his stomach started swelling a bit, but it was still soft, and the surgeons were optimistic.

But, once again, his stomach continued to swell, and by Friday there was still no sign of a dirty nappy. On Friday evening, they used an enema to wash out his colon, to try and clear anything which may be blocking it and encourage something to pass. But, this too failed, so at 9:30 PM on Friday night, they took him back in to theatre. There was no other option this time – the stoma was going back in.

Round Three

Thankfully, surgery once again went as well as it could have, and his gut immediately deflated after being opened up again. They once again kept him sedated with a breathing tube, and this time, they kept him in PICU for two nights to recover. After that, it was down to HDU for a night, and then back up to the ward by Monday.

Although we really were right back to square one, we were happy that at least his recovery was finally on track. But of course, nothing could be quite that easy! All the stress and many nights at the hospital had taken a huge toll on us, and this resulted in Kristy picking up a mysterious illness which manifested as a massively high fever. I took her home on Monday afternoon so she could rest and get better, which also meant it was my turn to pull some night shifts. We figured a few days of rest and she’d be right back on her feet – and needless to say, she was anxious not being allowed to be near her baby!

But, her illness seemed to only get worse in the days that followed, and repeated trips to the doctor, plus an armslength of bloodtests revealed nothing about what her illness may have been. So, for the rest of the week, I did the night shift, sleeping next to Leo in either a recliner chair or a trundle cot when they were available. My Mom came up each morning at about 7 AM to relieve me so I could go to work; Kristy’s parents then took the afternoon shifts from about 1 PM onwards, only to repeat it all again the next night.

It was a long, draining week.

But, thankfully, Leo continued to recover well, and by Monday, he was back to full feeds on demand. His team of medical specialists were all quite happy with his progress, and saw no reason to keep him in any longer. And so finally, after three rounds of surgery and over two weeks in hospital, we all checked out and came home.


The surgeon’s aren’t sure what went wrong. All signs seemed to indicate that Leo’s gut would just pick up and start working, but for some reason, it didn’t – or at least, it wasn’t working fast enough. He’s since had a few more tests to rule out other possibilities, and they’ve all come back clear – so the surgeons are still optimistic that his colon should work. As such, in a few months time, they’ll attempt to close up his stoma again, but there’ll be a number of extra precautions this time.

Firstly, some weeks before the operation, we’ll be injecting fluids into his stoma to start exercising his colon without putting too much pressure on to it. We asked why this wasn’t done the first time, and the simple answer was that “it isn’t usually required.”. Secondly, during his second operation, they installed a central line, which has stayed in now that he’s home. After his next round of surgery, they can use this line to feed him, which will also ensure that he’s not getting any unnecessary pressure put on his stomach. Hopefully this will buy him the time he needs for his gut to pick up and start working normally.

For now though, its nice just to have him home again. And, we’re very lucky that despite what he’s been through, he seems to keep in pretty good spirits.

Leo in the ward at RCH

Posted in cystic fibrosis, leo
19 comments on “Surgery, surgery, surgery
  1. He is adorable and a fighter!

  2. Thinking of you all. What love you have, and you have two brilliant boys!

  3. What a journey you guys are on. He’s a strong little man. Hope you are keeping well otherwise. Hugs.

  4. Stacey says:

    Thanks for the detailed update, Gerrod. And doesn’t he look like Jason in that photo!! Hope Kristy is better soon. Lots of love and hugs from us four xoxo

  5. Louisa Dahl says:

    He always seems so happy and peaceful when I’ve seen him. We hope you get a smooth run from here xxx

  6. Oh, what an ordeal. Really hope it’s onward and upward for Team Thomas. xx

  7. Kira says:

    Such a gorgeous little man! I’m sure this barely touches on the heartache and stress you guys are going through. Leo must know what a wonderful family he has as he’s determined to get well so he can come home and play! Look at that smile!

  8. How cute is he! Check out that dimple. I love reading your updates, what a fighter Leo is, it must be hard, my thoughts are with you often.

  9. Thinking of and praying for you all on this huge journey of yours. Leo is such a cutie. I love his smile :) Lots of love from the Carpenter family. xxoo

  10. Stay strong and look after yourselves too. Thank you for sharing and lots of positive energy and thoughts coming your way.

  11. what a trooper- and look at that dimple!!!

  12. John WOO says:

    Many thanks to God helped Leo’s case. Very happy to know he is good and keep fighting in high spirit (with You and Kristy)!
    Wish Kristy get well soooooooon!

  13. Sarah says:

    Gorgeous pic! Sorry to hear of all the trouble :(. Glad to hear Leo is on the way up again. Hope Kristy is on the mend too!

  14. Cath says:

    Gosh guys. That sounds really tough. You are both doing an amazing job. Leo is super cute – it is lovely to see him smiling despite all he’s been through!

  15. Lou says:

    Look at that cute boy! Beautiful dimple!! Hope it all goes smoothly now. We think of you guys all the time. Love to you all. Lou and Jas xx

  16. Sending love & hugs to you all …. It has been a tough time xxxx

  17. rob says:

    He still appears to have an awesomly mischievous smile despite it all. Hoping the best for you guys.

  18. What a trooper! Thinking of you all.

  19. Claire Marie says:

    oh that sweet little smile! such a little trooper <3

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