Life and Leo

Sadly, Leo is still in hospital, and will be for probably a few more weeks yet. He’s making good progress on his recovery though – he graduated from ICN into the SCN about a week ago, which means the medical staff are now focused on building his strength (rather than recovering him from surgery).

Leo in SCN

Best of all, this also means that its open season on cuddles again (at least for Kristy and I)!

His biggest challenge is now feeding, and getting his stomach to process milk. Every three hours he is given three millilitres of milk, and every six hours they aspirate his stomach to see how it’s coping. Basically, they eyeball whatever came out against a Gastric Aspirate Chart and give him a score from 1 – 8.

               

When they first started his feeds, he was producing more liquid than he was getting, and in the 5 – 8 range. This was obviously not great, and the doctors took it as a sign that his stomach needed more time to recover. So, they’d cancel the feeds, leave him for a day or two, then try again.

This has happened three times, but since starting the third time, his stomach is doing a better job of processing the milk. Every second aspirate yesterday and today has tag-teamed between perfect and average; for example, his 6 AM aspirate was 10ml at colour 4, but his midday aspirate was practically empty and colour 1. Hopefully by tomorrow or Wednesday, all his aspirates will be clear and empty, as at that point, they’ll really start ramping up his milk consumption (and eventually let him breastfeed).

So, for now, he’s still being (mainly) fed via his central line, which means we still don’t know how long it will be until he can come home. We figured the best way of coping with the time uncertainty was to basically just accepted this as “life as normal” for now, and to integrate as many visits as possible into our “normal lives”.

As such, I’m back doing full days at work, and luckily for us, my office is practically on the same street as the hospital. This has made pop-in/short notice visits a lot easier, though parking around the RBH is a nightmare. It also means I’m now working part-time as a taxi driver, ferrying Kristy between work and the hospital in order to save her having to park down there!

More importantly, Oscar has started pre-kindy this year! He is going two days a week to a childcare centre at Everton Park, and is very lucky to be in the same class as his buddy Ethan! It was a bit of a rocky start (as I’m sure it is for most kids), as he was not impressed that Mummy didn’t stay around to take care of him. But, after only a few weeks of the new routine, the tears have dried up, and he seems to be really enjoying himself (though he still tells us “I don’t want to go to kindy today!” every Monday and Tuesday morning!).

We’ve even managed a little bit of of socialising in between all the running around. We were lucky enough to have Suz and Al (plus three kids) over on Saturday for lunch, which was not only awesome just for a catch up, but gave us a great opportunity to pick their medical brains over a relaxed coffee. Julian and Shelley also came over Saturday night and cooked us a delicious BBQ chicken pasta! And rounding off the weekend, we also had the Durhams drop through on Sunday night with dinner for us all in tow!

So for now, we’re still staying positive, and still just taking life one day at a time. We’re extremely thankful to our wonderful family and friends for all the love, support, meals, help, and coffee that they’ve been supplying to us – it has really made us realise what an extensive support network we have here. Once again I apologise if we’re a bit slow on replies to messages or sending out “Thank You’s”, but please know that you are truly appreciated, and we hope to one day be able to repay everyone for their kindness!

Posted in cystic fibrosis, leo
4 comments on “Life and Leo
  1. Lauren says:

    That’s one cute baby right there. I can’t wait for cuddles when he’s all better and settled at home.

  2. Shelley says:

    Keep up the good aspirate numbers Leo!

  3. Bill Foley says:

    Very good to read, belatedly, of young Leo’s progress but it looks encouraging. I can only imagine how difficult it is for you and Kristy to not be able to take him home but now it’s just a matter of waiting I guess. All the best to you all.
    “Uncle” Bill

  4. Lesley Bloomfield says:

    Not very au fait with your blog so I’m pleased you give us news on Facebook as well. I believe Leo is now home, which is great news. Please keep us posted! We think of you often. Peter & Lesley

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