Six Weeks Post Surgery and School Starts

Today is exactly six weeks post surgery and also the first day back at school. He got through the first day pretty well .. albeit a bit tired. Mind you it was 43.2 degrees celcius at just after 3pm .. about school finish time. For those foreigners that just don't get it .. that equates to 109.76 degrees Fahrenheit. The rest of the week sort of goes 42, 41 and finish the week on Friday with another 41.

Just as I am typing this update my aircraft has been delayed by 30 minutes "Due to the late arrival of your aircraft". Bugger .. that makes for getting in quite late! Anyway .. more time to dribble on here given Facebook isn't working with many applications due to the computer in the lounge not having flash downloaded (nor the ability to do it .. how would I know that .. well you got to try these things).

So six weeks post surgery and Connor appears to be completely back to normal ... well .. with a bit of an appetite. He has been without overnight feeds for about two weeks now and somewhere near holding his own. The end of this week will be the measurement which will be important as neither Tarn nor I want to lose too much ground. 1 kg is about our maximum where we will be back to intervening. It is just sooooo good to even enjoy this short period of normality where Connor can get up by himself and come down to say "good morning" as only he can.

As for the surgery and what the patch has achieved .. very hard to say from a physical observation aspect. Yes the echos reveal a quicker emptying time of the chamber and a wider opening to the valve but what about just observing Connor. Well .. quite a few people have commented about improved colour and we tend to agree. That's the sunbed we have been 'baking' him on .... just kidding ... Huddy is busy using that. Ok ok .. just in case someone completely misses my humour, we don't really have a sunbed. I'm not sure we really need FACs knocking at the door enquiring about mistreatment of children by exposing them to UV radiation for a cool tan.

I digressed ... so apart from colour he does seem to be bouncing around plenty but he seemed to do that prior to the surgery anyway .. it's just so hard to tell if he has improved stamina/endurance now. I suspect he has. The main thing is that he is back at school, back in routine and the operation is now just another blip on the radar.

Four Weeks Post Surgery

Time flies when you are having fun. I have been back at work for nearly two weeks and Connor is now four weeks post surgery. In reality you wouldn't even know he had undergone open heart surgery and this could have been said about two weeks ago .. well unless he lifted his shirt or Huddy tried to play rough and tumble and pushed on the chest which was still a bit sore then. There appears to be no soreness now unless he get a bump so this is great although the centre of the wound still doesn't look the greatest and will remain prominent as the rest of the scar heals beautifully.

I don't know what it is, encouragement, being that bit older, the surgery, greater hunger but we when we have done overnight feeds on our return (approximately 50% of the time), we have only done 200mls which is a measly 40% of what he was having prior to the surgery. He is eating so well and we are soooooooooo close to not needing any top up. Only time will tell how long it is going to take and how we will deal with medications which for his entire six years of life he has had through a tube .. this will be the final hurdle to removing the gastrostomy button. When the time comes, hopefully waving a brochure showing a jumping castle or new trampoline might be enough to learn the required technique to swallow tablets. I would imagine it won't be an easy thing but hey ... we've jumped bigger hurdles.

On a sadder note, Dan at 0ddness has written a beautiful tribute to his little angle Bethy who was taken as a result of complications following open heart surgery and obviously congenital heart disease. You can see his beautiful message to his angel here. When you have a child with a condition as complex as Connor's , you do the hospital(s) often enough to know people who have lost their child to this insideous disease. We think of them often and count our blessings that despite our many challenges we are still fortunate in many ways. Don't be a stranger .. leave Dan a note. Show him us Aussies aren't still cross about them shipping us out to Australia.

Panadol Free

In comes the new year and we are now two weeks post surgery. Connor has now been Panadol free for two days and says his chest has not been hurting which is fantastic news. His recovery appears to be going damn well. At the same time he has had quite a few nights free of the overnight milk and really appears to have increased his eating. After what happened early in 2008 where we were expecting to wean off overnight feeds we will not get too excited however now that we are aware of the fructose issue and appear to have it managed, we will certainly give it a good hard heave ho. Connor is very keen to not have the feeds and just a wee bit keen to also get rid of the button. Now who was the tool that promised a jumping castle at a "button party" when the time came .... oh yeah .. that would be me in a moment of bribery encouragement.

Happy New Year to you and here's to a happy, healthy year.