My turn for surgery

Being the loving, caring guy that I am, I felt it wasn’t fair to be putting poor Leo through all this surgery without stepping up to the plate and having a burl myself. So yesterday, I trotted along to St Andrew’s Hospital in the city where I had an operation to correct my deviated septum.

As instructed, I fronted up at hospital bright and early at 6:30 AM, where I was checked in and soon taken down to the surgical waiting area. “Waiting” being the operative word there; I sat around for about two-and-a-half hours before being called through to get changed into a gown and then placed into the holding bay. Another two hours waiting there, and I was taken through to a bed. I thought for sure it must be almost my turn, given that I heard lots of other people around me being brought to a bed then taken almost immediately, but I ended up falling alseep and being woken almost two hours later!

Finally, at around 2:30 PM I was wheeled into the theatre. I have to admit that I was feeling a little bit nervous, having never been under a general anaesthetic before. The anaesthetist (which I’ve decided most people pronounce incorrectly by dropping the first ‘s’) put a cannula into my arm and said, “you may start feeling a bit dizzy soon”. Sure enough, the room soon started spinning, so I closed my eyes. Next thing I knew I was waking up in the recovery ward, where a woman was very insistently asking me how I was feeling.

My memory is a bit blurry after that, but I know it was about 5:30 PM when I was wheeled to the ward, feeling a little worse for wear but overall not too bad. I had a headache, my throat was very sore (from having a breathing tube down there) but as it turns out my nose barely hurt at all. That didn’t stop it from bleeding quite a bit though, so I had to wear cold packs on my head and neck all night, plus a piece of green gauze under my nose to soak up the blood – somewhat like a terrible green moustache. It was not my finest hour.

Post surgery

After a fairly ordinary night’s sleep though, things started looking up. The headache had gone, the bleeding had subsided, and my throat was starting to feel better. The surgeon came through at about 9 AM to check up on me, then the pharmacist came and delivered my prescriptions, and by 10:30 AM, I was on my merry way!

So now I’m back at home, in recovery for a few days no doubt, but hopefully well on the way to being fully mended. The surgeon’s theory is that once all the swelling has gone done, I’ll once again be able to smell and breathe through my nose at the capacity I could when I was a kid, so I’m thoroughly looking forward to seeing if that’s true. My sense of smell is (/was?) shocking!

Posted in the sickness

King Island Walk

A while back, Kristy found an article on must do Brisbane about walking to an island at low tide. Intriguing! Sounded like something right up our alley! So we trundled over to Wellington Point on Saturday to check it out.

Oscar was particularly worried about getting stranded on the island as the tide came in (thanks, Fireman Sam) – so we started our journey as the tide was still on its way out. As it turns out, this was entirely unnecessary – even before low tide the path to the island was well exposed out of the water, and to be honest, the journey would have probably been more exciting had we have been walking in ankle deep water for at least part of the way. That said, I’ve no idea how quickly the tide turns around so for our first trip out it was probably good that we err’ed on the safe side!

King Island Walk

The walk itself is fairly easy, though all the broken shells on the sand can be deceptively sharp. Those of us without footwear were certainly feeling a little worse for wear by the time we got back to shore – but nothing that a bit of a rest couldn’t fix. Its about 1 KM each way, which is about Oscar’s walking limit – he asked to be carried on a number of occasions on the journey back, but with enough encouragement (especially from Pa who kept challenging him to a race) he made it almost the entire way on his own.

Even though the island itself is nothing more than a circle of mangroves, it was still exciting in Oscar’s eyes at it was his first time in a “mangrove forest”. Plus, we got to see/collect lots of interesting things along the way, like sand crabs, and different shaped/textured rocks and shells – some of which even had little sea snails living inside!

Kristy and Oscar on King Island

But with an adventure like this, its definitely less about the destination than it is about the journey, so from that point of view it was a definite win.

Posted in life in australia

Scumbags

After a week of staying in hospital with Leo, I was pretty exhausted by the time it got to Friday night. Worse still, the TV over his cot didn’t pick up channel 9, so I couldn’t even watch the Broncos game as I tried to nurse him to sleep!

In the morning, Mom came up as usual to relieve my shift, and afterwards, I walked back to my car which had been parked overnight on Herston Road. Now, I know that you’re supposed to check your mirrors before you start driving, but when you’re the only one who drives the car, its easy to fall into the habit of presuming that your mirrors are going to be exactly where they should be. As such, it was only when I got about half-way home and needed to check my passenger-side mirror in order to change lanes, that I noticed that not only was the mirror not where it should have been, but actually, it wasn’t even visible!

I immediately pulled over to inspect the problem, only to find that someone had forced the mirror so far backwards that the back cover had actually snapped right off! I was not impressed. Thankfully though, the assembly itself seemed to be intact, so I managed to bend it back to where it should have been and once again had a functioning mirror.

Swift Mirror

I turned the car around and drove back to where I had parked and sure enough, there was the back cover sitting on the side of the road – also, thankfully, fully intact. In fact, as it turned out, even all of the clips which hold the various parts in place were still intact.

When I got home, I pushed all the clips back together and reattached the cover to the mirror, and everything was back to where it should have been. The mirror arm suffered some minor scratches where the assembly rubbed up against it, but on the whole the paintwork escaped mostly unscathed. So, I guess it could have been worse.

Still, not the nicest way to round out the week. Looking back at where the car was parked, there is no way it could have been accidental, so it baffles me as to why someone would randomly do that. Other than the fact that they’re a scumbag, that is.

Posted in gripes

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!

Read more ›

Posted in cystic fibrosis, leo

The weigh-in

Every Wednesday and Thursday, the Royal Children’s Hospital runs a “clinic”, at which they (do their best to) make available all the specialists involved in Leo’s care (and naturally, other kids with CF too). I presume the clinic runs for other illnesses too, but obviously we’re only focusing on one here.

Attending clinics certainly isn’t a requirement, but we are encouraged to go along if we have any questions for the specialists. And there are a lot of specialists; his team consists of a psychologist, a psychiatrist, a nutritionist, a cardiothoracic consultant, a physiotherapist, a social worker, an occupational therapist, an overseeing doctor, plus an administrative nurse to keep the whole thing together. There may be more, but that’s all I can think of for now!

Although attending clinic isn’t mandatory, my understanding is that they do want you to come along at least at a certain frequency. For newborns, this starts out at weekly for the first month or so, then when they feel like you’re getting the hang of things, it goes to two weeks, then monthly, and eventually three-monthly. Lucky for us, Leo’s team felt like we had a pretty decent understanding of what we were required to do, and as such, we moved straight into the “two week visits” camp after only one clinic! Yesssss!!

For the most part, attending the clinic involves a lot of talking; we can make requests to see particular specialists, or inversely, any of the specialists can drop in to see us. We don’t see every specialist on every visit – just the ones who want to discuss something with us, or check up on Leo’s progress.

One aspect that seemingly is constant though is the weigh-in. Since CF has such a large effect on digestion, monitoring Leo’s weight gain is of crucial importance. And so, at his clinic last week, he had his first (of many) weigh-ins.

And the result? A total pass! He had gained 700g in the two weeks since coming home from hospital – about three times more than the minimum he was required to gain. What a trooper! We weren’t overly surprised though; he really enjoys his food, to the point where he makes his disapproval very apparent when you take it away from him! And just look at those chubby cheeks!

Chubby cheeks!

So, all in all, very good news!

Posted in cystic fibrosis, leo

Riding the migraine train

After many months clear of migraines (maybe 9?), I got hit with a whopper last Wednesday. I was driving to an appointment at the time, when I noticed that my vision was starting to go a little blurry. At first I thought my eyes just needed a good rub, but after a few minutes I had the sinking feeling in my stomach which meant a migraine was definitely on the way.

Sure enough, about 30 minutes later my vision was so blurry that I could barely see anything. This is fairly typical of how migraines start for me. With experience, I’ve worked out that if I can ingest some ibuprofen early in the game (i.e. before my vision has gone) then the severity of the migraine headache that follows is greatly reduced. Sadly, since I was out and about and didn’t have any nurofen on me, I completely missed my window of opportunity. By the time I arrived home, the migraine had started to hit, so all I could do was go to bed and try to sleep it out.

Like I said, it was a whopper, so sleeping didn’t really work. A new technique I gave a run this time was putting my feet in hot water whilst holding a cold pack on my neck. The theory is that the temperature differences at the extremities causes blood to drain away from your head, hence reducing the severity of the migraine. I found that this technique does work, but it only provides relief while you’re sitting there, but as soon as you take your feet out of the water and the cold pack from your neck, the migraine comes back with a vengeance.

Eventually I went and saw a physio/acupuncturist (Simon at Go2 Human Performance, if you’re interested), who did give me some relief by using a combination of acupuncture points and some physio on my shoulders, neck, and skull. I definitely felt better after leaving, but the headache was still lingering. Thankfully, it was enough relief to allow me to eat some dinner – before that, I hadn’t eaten since breakfast, since migraines also completely turn your stomach inside out. I’ve never had a migraine so bad that its made me throw up, but there’d be no way I could eat anything while its running its course. This is also the reason its important to take whatever drugs you’re going to try as early as possible – once your stomach “stops working”, it actually prevents you from absorbing anything through your gut, so taking medicine late in the game has no affect (unless you go the suppository route – uhm, no thanks).

A good sleep overnight cleared things up, and then I had the joy of spending the next day feeling hung over. On Friday however, I got hit with yet another migraine! Two in three days! Thankfully, I have ibuprofen at my desk, so I quickly downed two capsules then made an appointment with my GP (who conveniently is only a three minute drive from work). She prescribed me some Naramig tablets, so I popped one of those as well. I’m pleased to say that the combination of the two seemed to be quite effective – I still got hit with a headache, but it was far, far less severe than what I normally get. Really, I took the naramig a bit too late, so hopefully next time I can pop one a bit earlier so it is even more effective. My GP also prescribed some Maxolon, to help prevent the feeling of stomach sickness, so the next time I get hit with a migraine, I’m to try the “three drug cocktail” (her words, not mine!).

Cycling to work definitely seems to be a migraine trigger for me, and sure enough, I had cycled in on the Tuesday before what I’m now calling Whopper Wednesday. One theory with exercise related migraines is that vigorous exercise burns through all your magnesium, and as such, I’ve been taking magnesium supplements regularly for the last year or so. However, I suspect that I haven’t been taking a high enough dose around days when I cycle in summer. There seems to be some link for me between intensive cycles on hot days and migraines, as I only seem to get them in the first six months of the year. Tuesday had been one of the hottest days that I’ve cycled in a long time, and naturally I was cycling as quickly as I could to break my own records (which I did!), so it was foolish of me not to greatly increase my magnesium supplements before and after the ride.

The other tip I’ve since read is to take an anti-inflammatory before riding. Migraines are thought to be caused by swelling of blood vessels in the brain, and obviously a high intensity exercise causes a higher rate of blood flow – its easy to see the link. So, by taking an anti-inflammatory before exercise, the theory is that it helps prevent the blood vessels from swelling. I tried this tip for my cycle to work yesterday, and I also decided to let my existing records stand, and instead took it a bit easier than what I normally do. So, hopefully this will all be helpful; traditionally, the migraines hit the day after exercise, so by the end of today I’ll have an answer. Fingers crossed!

Posted in migraines

Sutton’s Beach

Desperate for a fix of sand on Sunday, we headed to Sutton’s Beach to see what it had to offer. Its funny as I don’t really think of the Redcliffe area as “beachy” but if you just want to dig in the sand and be close to a large body of salt water, it certainly beats the hour-and-a-bit drive to either of the coasts. Within about three minutes of arriving, we already had our “fort” set up, and only a few minutes after that, we had multiple layers of defense built to protect it from the oncoming tide.

Oscar at Sutton's Beach

As it turns out, it wasn’t really the oncoming tide that I had predicted.

One thing I noticed was that the sand was far “rockier” than the super-fine sand that you get at the coasts, which I’m more used to. This actually made it far easier to dig – though it didn’t hold its shape anywhere near as well (as such, our staircase was a disaster). Another bonus is it made it far easier to wash off!

Of course, no trip to the peninsula would be complete without stopping in on the Durham’s back deck for a coffee – which quickly turned into lunch, coffee, and cake. The Durhams treated us to pizza from Zorbas and I have to admit it was one of the best pizzas that I’ve had for a long time. Whatever their secret ingredient was (garlic), it really made the toppings sizzle (lots and lots of garlic). Delicious!

Posted in life in australia

Oscar’s Kindy Picnic

On Saturday morning, we trolleyed down to Teralba Park to meet up with a gaggle of other youngsters (and their families) from Oscar’s kindy. It was a picnic morning tea organised by the centre to give the families and staff a chance to mingle with each other on non-”school” grounds.

Oscar and Oli playing cricket

Its was such a dry February for Brisbane, I can’t really say that we were “lucky with the weather”, as really, it would have been luckier if it were raining. But we weren’t complaining – rain probably would have made a mess of the cricket pitch.

The picnic only ran for two hours and it felt like by the time we got there and had a bit of a play around, it was already time to get going again! As such, I didn’t meet one new person from kindy – but I recognised a few people at least! Still, its always nice to catch up with the Dahls, and the picnic certainly made for a nice excuse to get out on a lovely Saturday morning!

Kiara

A few random photos in the Kindy Picnic album on Google+.

Posted in life in australia

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

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

Recent Comments

  • Carolyn: All fun aside, that is not a nice operation. I had one similar back when I was in my 20′s. Get well soon. Lots of Love.
  • Celeste Donnachie: Dude… that green moustache is impressive! You guys are going through so much. I love your positivity and upbeat attitude! You’ll conquer the world with it you know!...
  • Robyn: Being to look like Groucho Marx. Hope you recover quickly.
  • Mr Ed: :( I hope things turn the corner for you lot.. it seems like things get rougher and rougher.
  • Aubain Noel: Wow – glad it went well! Amazing picture too

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Kristy ready to go

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