Leo is 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”!
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!