Good news, and…

Leo is home!

Leo at home

During his recovery in the SCN, one of the consulting doctors had the bright idea to try him with a breastfeed to see how he’d take it. Of course, with his stomach being so touch-and-go, it had to be the tiniest of tiny feeds, so Kristy had to express beforehand. After that, she tried him with a breastfeed, and everyone was super excited to see that he latched on immediately and started feeding happily (even though he wasn’t really getting anything out of it).

There’s something quite magical about breastfeeding; even though before that Leo had been attempting the milk via a syringe, once he got his first taste fresh from the source, his recovery snowballed. Within a day he went from three mills to 40 mills, every three hours. And every time his feeds went up, his drip-feeds went down, until finally, by Friday, his central line was removed completely, and he was fully supporting himself on milk!

It was such a relief to see almost all of his tubes come out – as Kristy put it so well, he suddenly got upgraded to “Baby 2.0: Now wireless”!

Leo: Now wireless!

Before being discharged, he and Kristy had to spend 24 hours together in “parent craft” – essentially a (hospital decorated) hotel room, within the ward. The idea is that the medical staff needed to be happy that Kristy could take care of all of his needs without intervention, before they’d allow them to go home. Needless to say, they passed with flying colours, so on Monday afternoon, Oscar and I drove up to the hospital and brought them home. We were a proper family again!

So, obviously, that’s the good news. Sadly, the not so great news is that Leo’s tests have now conclusively shown that he has Cystic Fibrosis (CF). We had been preparing for this diagnosis since his operation, as the surgeon was quite confident that that was the cause of the blockage in his intestines – to the point that 80% – 90% of children who present with Leo’s condition (Merconium Ileus) are later diagnosed with CF. In fact, the surgeon even went so far as to say that “if the test results show that he doesn’t have CF, then the tests are probably wrong.”.

A few weeks of preparation did little to numb the blow of the confirmed diagnosis, though. As you can probably imagine, we’ve been a little reserved while we came to grips with what it all means. However, now that his diagnosis has had some time to settle in, we’re solidly focused on staying positive, getting educated about living with CF, taking each day as it comes, and keeping realistic short-term goals.

For those of you who don’t know much about CF – there’s no shame, we were firmly in this camp pre-diagnosis – the very over-simplified summary of the illness is that it causes the mucus produced your body to be too thick. This causes issues for any organs involving mucus – but primarily, the lungs (which have trouble shifting the thick mucus), and the gut (which has trouble breaking down food in the intestines). And, its degenerative – that is, the older you are, the worse it gets. Happily though, these days, kids born with CF typically go on to lead long, fairly normal lives – albeit with a rigorous daily schedule of maintenance to keep them healthy.

Now that Leo’s home and 100% under our care, there are three main “extras” that we have added to his routine. First, he gets daily physiotherapy from Kristy and/or me, to encourage the mucus to move through his lungs as it would for a CF-free child. Secondly, we have to administer medicine (enzymes) before every feed to help him digest his milk, and to help his body to absorb the nutrients. Thirdly – and perhaps most importantly – we have to do everything we can to keep him from getting sick. Kids with CF aren’t necessarily more likely to get sick compared to a non-CF kid, but when they do get sick, it’s much harder for them to get healthy again. We apologise in advance if we start coming off as paranoid when it comes to germs and socialising, but we’d rather be safe than sorry!

On the upside though, things could be far worse! Since CF is the most common degenerative disease in Australia, it both well funded, and well understood. Treatments available for CF have been constantly improving, and the long-term outlook for genetic therapy is quite hopeful. What’s more – as I mentioned before – kids with CF for the most part live normal lives, to the point where an “outsider looking in” likely wouldn’t know that a child has CF.

So basically, the more that we invest in keeping Leo healthy, the better his quality and length of life. So really, it’s quite simple – eat well, stay healthy, live long and prosper! It’s good advice for anyone, really!

And overall – we’re just stoked to have him home!

Oscar and Leo

Posted in cystic fibrosis, leo
25 comments on “Good news, and…
  1. Yay!!!! Kristy’s breast milk clearly has super powers. I’ll wash my hands 50 million times before coming over for cuddles when you’re all settled!!!!

  2. Beautiful, beautiful little boy. He looks just like his big brother! You must all be very proud and happy to have him home. Xxx

  3. Yay for being home! What a roller coaster you’re on (parenting I mean!!)
    May you have lots of salty goodness for Leo. I hope there are many medical discoveries soon that help Leo and the other beautiful cherubs I know with CF.

  4. Yay for being home! What a roller coaster you’re on (parenting I mean!!)
    May you have lots of salty goodness for Leo. I hope there are many medical discoveries soon that help Leo and the other beautiful cherubs I know with CF.

  5. Stackers says:

    Congratulations again, must be amazing to be altogether in your family home. Yay for boobie milk :-) Sounds like you’re already well into your new routine and CF ‘maintenance schedule’. I’m sure all your nearby friends and family will be helping out with the boring house stuff while you get settled, but don’t be shy to ask if the washing needs hanging out etc. If only I was in Brisbane, I love a bit of washing :-)

  6. So glad you’re able to have your Leo home! Thinking of you as you make the adjustments necessary for his care. xxoo

  7. John WOO says:

    Sure we will clean our hands when we meet in April! Glad to know you are all working hard and be positive!

  8. Claire Marie says:

    so glad you’re home with Leo! thinking of all of you xo

  9. Dani Cooke says:

    Congratulations on getting your little lion home! Couldn’t be more excited that he’s where he’s meant to be. He’s absolutely beautiful, and I can’t wait to meet him. Until then I’m sending lots of love and cuddles your way. You all will be in my thoughts and prayers! Love you all!

  10. Micah Wicham says:

    Yay! Congrats guys.

  11. We are just so super excited that your family are all home together, even more excited to come and meet Leo.

  12. Wow what a crazy time I bet. You sound incredibly positive, which is not at all surprising. Lucky Leo has such a strong fighting name and amaze-balls parents, he is in great hands! Take care

  13. Shelley says:

    Oops, should have had my tissues handy before reading about Leo’s speedy recovery! So very happy for the Thomases that Leo is home!

  14. Congrats on getting Leo finally home

  15. Love hearing his little cry across the fence! Welcome to the neighbourhood little Leo!

  16. Love hearing his little cry across the fence! Welcome to the neighbourhood little Leo!

  17. Cath says:

    That’s rough about the CF diagnosis. Sounds like you guys are doing an amazing job of caring for him and staying positive. When you’re settled, we’d love to come and visit him and catch up. So happy that you’re all at home together now. Love to all four of you.

  18. Kira says:

    Welcome home at last, little Leo! You’ve picked a great family to grow up with. Such loving parents and a great attitude approaching the CF routine and I bet it won’t be long until Oscar wants to learn the physio routine to help out! You are going to have a great big brother there.
    We know you’ll be flooded with help and visitors but we hope to catch up before long to meet little Leo too!
    Love,
    Travis, Kira and Aidan xx

  19. Leanne says:

    Gerrod, Kristy and Oscar, we are so glad to hear Leo is home… he is absolutely beautiful… enjoy the settling in time as Leo finds his way around his new home. Love to you all xxx

  20. Jo says:

    What gorgeous photos! Delighted to hear you’re all together at home! I bet Oscar is loving having his little mate in the house. Thinking of you all as you adjust to life as a family of four, and praying for Leo’s good health. He couldn’t have been born into a more beautiful family. I will try to get down once you are settled, without my little germ carriers! ;) xx

  21. Lou says:

    So glad Leo is home- that is awesome news!! Leo is so beautiful and he looks like he has grown stacks since the last piccie. Well done Kristy on that amazing breast milk (hats off to you for keeping your supply up!) Hope you all settle into home life – lovely that you are all home together. Love to you all. xx

  22. I’m so glad to hear Leo is home with his family! When he is settled in, we will have to make good on our promise to catch up! xx

  23. I’m so glad to hear Leo is home with his family! When he is settled in, we will have to make good on our promise to catch up! xx

  24. What an amazing story and amazing parents you are. Love you positivity. Take care

  25. Be strong. I know you all are

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