The Special Zipper

Click on URL to Win $60,000 for HeartKids

2009-07-11T23:08:00.003+09:30

Nobody probably visits this blog anymore but just in case, there is a Canon competition where a photo of a cardiac baby was leading and is now coming second. Votes are needed. There is no need for me to point out how much funding is needed to address the horrific nature of childhood heart disease.

You can vote at the following URL ..

http://www1.canon.com.au/creativeforacause/Photo/Gallery.aspx?photo=28EAC9BECE75088E

Thanks to anyone who drops past and takes the few minutes to help in what may make a great difference. It doesn't cost a cent .. only a few minutes of your time.

Bye Bye Heart Medications

2009-06-28T10:01:00.003+09:30

I have been very remiss in not posting the most exciting news of (I think) all times. Despite Connor still having a narrow Mitral Valve and expected surgery again at that mysterious point of time in the future (usually the left field time), Connor has been off every medication for almost 6 weeks now and going well. Add to that he is JUST holding his own without peg feeding, to say we are riding a bit of a high is an understatement.

The road ahead is still long and hard, the majority of which Connor takes in his stride and rises to each challenge, and I can only say that it is Connor that should have been awarded the recent Honour that was awarded to me in the Queen's Birthday Honours. In your six years 'mister' you have achieved more than I could in a lifetime. Nothing makes us prouder of watching you attempt and scale the next hurdle given that your hurdling race is not a 110m race but more a marathon of hurdles dispersed every 10m.

In a saying developed by Tarn and based around "Guess How Much I love You" with Nutbrown Hare, we "love you to the moon and stars and back". Ok Huddy .. we haven't forgotten you.

Special Zipper Challenge Finally Out of My Hands

2009-06-28T09:48:00.002+09:30

Wow .. it has been so long posting that I couldn't even remember my login details ... third attempt necessary.

Back almost a year ago I mentioned that I was holding the Sir Donald Bradman A.C Limited Edition, the final item traded over a lengthy two year period which was meant to be 12 months and $10,000 worth, until such time as HeartKids SA had an appropriate function to allow auction of the item with funds to go to assist families travelling to Melbourne (a scheme now commenced by the organisation and ironically we were the first family to utilise the scheme with Connor's surgery in December of last year). Just quietly, I know I broke all rules in that was the most lengthy confusing sentance but them the breaks when I happen to be at Sydney Airport with several minutes up my sleeve.

So from memory HeartKids SA will auction the item as part of a sport auction at a Melbourne Cup Luncheon style function later in the year. Given the time that had elapsed I did raise the aspect that if they were not in a position to auction, then I would like to give Novita, an organisation that provides much support to Connor and us, a chance. The end result is that HeartKids SA as above now have a suitable function but have given an undertaking, agreed by the committee, that half the equivalent amount of the auction up to $1000 will be donated to Novita based on my choice to still provide the item after such a significant time period.

So for those that followed the journey from many years back starting from a clothes zipper of $2 value, whilst no where near my high standards I expect of myself, the trading will have a positive outcome hopefully into the thousand(s) of dollars. The item's current market value sits around $1,500 however get the right auction atmosphere, people present and the right cause, things can sometimes surprise.

Stay tuned for the final update and adios to the challenge email. Hard work for little outcome but I still look at how many people from around the world have visited during those times and now have a little more knowlege about Childhood Heart Disease (CHD) and the associated conditions that often come with it.

Six Weeks Post Surgery and School Starts

2009-01-27T18:36:00.002+10:30

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

2009-01-15T22:25:00.003+10:30

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

2009-01-01T23:09:00.003+10:30

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.

Connor's Recovery

2008-12-27T21:55:00.002+10:30

On Sunday just gone, that is only three and a bit days post his open heart surgery, we had the opportunity to have Connor discharged into our care. The problem was that we were not able to fly home until Wednesday (Christmas Eve) due to airline policy. Because on the Sunday morning (at least first thing) he was still on 100% monitoring, still hadn't had the wound dressing removed and was running a slight temperature, we decided to keep him admitted for another day as in 2004 he ended up with a partially collapsed lung after being discharged into the accommodation prior to returning to Adelaide.

Discharge is always a timely process and it was close to 1pm before we had all the documentation to take back to Adelaide as well as medications etc. We still made it to the Melbourne Zoo for a couple of hours catching a tram just outside our accommodation and then giving Connor a shoulder ride to the Zoo entrance where we sought to hire a stroller as Huddy was pretty much utilising the one we had bought with us. As we had come in the back entrance of the Zoo, the stollers were of course located at the front so my shoulders wore a little more weight whilst we got to the front of the Zoo by which time Connor had pins and needles in his leg(s) and wasn't so impressed.

We got to the butterfly enclosure and the elephants not far after which were putting on an interesting performance to say the least (two appeared to be up for it with a third not so keen on their activity). We didn't quite get all the way through the rainforest bit due to time and Connor was pretty tired by that stage anyway.

Tuesday morning we spent at the hospital waiting for a final echo (heart ultrasound) to get the all clear for flying home. Whilst we waited for the doctor to do the echo we joined the Heartkids Victoria morning tea and amazingly saw a mother and her child who was in the ICU and 7 West at the same time as Connor back in 2002. Her story is very complex and and extremely sad with her son having not only Hyperplastic Left Heart but also Scoliosis. Originally living in Western Australia she moved to Melbourne and hence her visit at the morning tea. We also met some other South Aussies whose child had been in for their fifth visit with a second clot to an artificial Mitral Valve with their child receiving the artificial or mechanical valve on the third reconstruction. I was commenting on how please we were to have retained Connor's valve and they were certainly suggesting that it is not great managing the artificial valve ie blood thinning medication and I believe daily testing of the blood etc and obviously clotting. The doctor appeared at the door and amazingly Connor walked with her despite her doing IV attempts 4 to 6 several days previous. He hadn't forgotten (and very much still hasn't) but he somehow sort of understood they were trying to help him get better ... not forget and forgive but I think forgive.

Flying at a tangent I asked Connor yesterday whether mummy and daddy had looked after him well when he was in hospital while we were talking about something else. He said that we did except when I tried to take his blood. This was a bit upsetting and I explained that we wouldn't let anyone hurt him except that we believed that the doctors needed to get the IV in as we didn't want him to get sick (simple explanation for the complex reason). He then said ... "That's ok". He also said asked me if I knew what the best part after being hurt was and told me when the pirates came to visit. The pirates were actually "Captain Starlights" from the Starlight Foundation. The reference to pirates is because of the word "captain" and his adoration of "Captain Feathersword". Having met the Wiggles and Captain Feathersword at the Adelaide concert, I found this really good that the visit by Captain Starlight had such a positive impact. The nurse, who outwardly showed he was quite upset by what happened that morning and the pain endured (despite our belief that he did nothing wrong and what occured was just an unfortunate almost freakish occurance), had phoned and asked if a Captain Starlight could visit. I will certainly send him a note letting him know what a positive outcome his idea, amongst a very stressful day for him and us, had obviously had. Regardless of all the positive stuff, not surprisingly Connor is very defensive of anyone coming near him now and not only in the hospital. He did not even want us to cut off his hospital bands as he thought that was going to cause him pain. He kept saying I will take them off tomorrow and I thought it was because they now meant something to him but it turned out that Tarn somehow convinced him to let her cut them off yesterday and he told me it didn't hurt and that was why he hadn't wanted to take them off. This is a new facet for us and given a future of visiting doctors, is going to make for interesting times.

His echo was interesting and identical to one several days earlier when his LA line was pulled along with the pacemaker wires. The gradient of the Mitral Valve was showing the same or higher than that measured pre surgery. The doctor advised not to look at the numbers as the time to empty the chamber was much quicker than previously and the pressure in the lungs and the left atrium from memory had reduced significantly. She even said that the surgeon could not believe the measure she took post surgery in the operating theature and did a repeat measurement himself ... very bizarre and very Connor as usual not following the medical books.
We were re-assured that they had seen a 50% improvement in the opening of the valve with the membrane that had grown having been receded.

We obtained all the clearance documentation to allow Connor to fly with the specific airline and prepared to head to the airport early Christmas Eve (7:15 am to be precise). Due to difference of opinion as to when we could fly home ie was seven days post surgery or include the day of surgery as different hospitals saw the policy differently, I rang the airline myself and got an even worse answer, totally wrong but was told seven days is post discharge. Anyway we had our clearance so was set ... well almost.

As we got to the airport I contemplated whether to present the documentation or just go with the flow and see what happened. Silly me raised it with a staff member. We were facilitated to the front of the line which was super and three copies of the clearance was made for presentation to the flight crew etc ... ok .. still all cool. We had an hour before the flight so had left heaps of time. Just as the flight was about to board a call came over the PA for Connor O'Neill to approach the counter. We were asked if we had documentation and I provided it. Then we were told to wait aside and that we may not be able to get on the flight as they needed to call the hospital. Ok .. enough is enough. We have just been through a significant ordeal with our child, followed all correct procedures and now being told we may not be able to fly home on this flight also just happening to be Christmas Eve. I said something like "you've got to be joking". I am certain I didn't drop a "f bomb" in front of the joking" but I certainly did raise my voice. As I tried to explain the doctors had signed off the form the lady cut me off and told me that she didn't need to speak to her like that (quickly and agitated was how I was speaking as she further inflamed the situation). I was also trying to say that 100 Adelaide families do this return trip and we know of a family recently that travelled back and wasn't even asked for the documentation ie in effect we were getting stuffed around because we had tried to do the right thing .. but no .. I was not given the chance to have a say. She said everything should be ok, she would be back and that if we couldn't get on we should be able to get on the next flight. "fan frickin tastic" .. just fabulous. We were expected at the hospital in Adelaide for an echo, chest x-ray, ecg and general check so our cardiologist had a baseline.

She returned several minutes later with some smart comment like "see .. I told you you would get on etc". I decided that I still wanted to have my say and explained that over 100 families from Adelaide do this same thing every year and could not understand why there had been confusion especially having to call the hospital when they had signed the clearance form. I also said we knew a family that had recently travelled prior to the seven days post surgery which is why we were frustrated. Her response ... "how would you know that". "Because we know the frickin family you moron" is what my brain wanted to say however I stopped after family. In response to my query as to why they would need to call the hospital, she said that they didn't call the hospital despite her previously saying that was what they were going to do (Tarn and I both heard it so it wasn't just me imagining it). She scanned our boarding passes without a word and a very scorny face ... Merry Christmas was no where written in that face ... As we walked down the aerobridge we were fuming at how rude she had been. We asked for her name as we approached the cabin. They weren't sure so I went back to find out. As I got on the cabin crew asked me if we had experienced a problem to which I indicated yes we had. They apologised. Shortly into the flight we were approached by the Chief Stewardess (??) who apologised for what had happened and explained that she had been the one to seek the information as having travelled on internation flights she had obviously had some horrendous experiences and she would have to be the one to give Connor CPR if anything went wrong enroute (mind you it is about a 60 minute flight). She did all the right things though .. she allowed us to explain why we were upset and whilst we now understood the other lady was only a messenger, it was the way in which she conveyed the message and didn't even allow me to speak to explain our situation. As a token gesture they gave us free range on the cabin trolley and checked on a number of occasions during flight whether we needed anything. I could well have gone a scotch and coke or two however we stuck with what we would have ordered anyway ... two packs of chips for the boys and us to share. It was obviously unfortunate event at the end of a very stressful period however I would have thought that someone in a customer service role would have assessed that a couple travelling with a young child who has a medical clearance certificate due to having undergone open heart surgery, may be a little stressed and may just show the slightest bit of compassion and actually let us tell our side of the story (because we might just happen to know something after all).

So by the time we reached Adelaide we had somewhat cooled however the airline will receive a little bit of a note about "how not to treat people with medical clearance certificates" and a positive aspect to how the stewardess had done a very good job of repairing the damage. It was at the stage just after boarding that I was adamant I would not fly with the airline again.

The hospital trip went pretty well with an echo convincing our cardiologist that the valve certainly looked bigger (well a greater diameter opening) and funnily enough their measurement of the gradient across the Mitral Valve actually showed significant improvement to measurements prior to surgery (go figure .. different equipment who knows). He was that confident that Connor looked good that we skipped the chest x ray until a follow up on Tuesday next week where we will review everything like medications etc. He was also pleased that the previous catheter measurement of the "stiff" wall of the ventricle had not shown up during the surgery.

Christmas Day Connor had a ball despite obviously being very tired. We tried to get him to have a sleep but the best was a little bit of a lie down watching a DVD (yes of course Wiggles). We are still finding he is in pain though with his chest despite brochures from the hospital saying they should not need regular pain relief post discharge. I find this amazing that he was discharged after 4.5 days post open heart surgery ie ribs cut, everything moved about (best description I can think of cause I really don't want to know the precise details although we obviously know a bit more) and then ribs rejoined and chest sewn up, but the advise by the brochure (not by the medicos however) is no regular pain relief should be necessary. Well I'm here to tell you different. I was mowing the lawn today and Connor came out and say down. He had a cap on so I couldn't see his eyes to well. I waved a couple of times but he didn't respond. A bit unusual I thought but kept mowing .. perhaps he was tired and just partly watching. After another five minutes of mowing I waved again about three times with no response. His head was down a bit and I suddenly thought he may be crying. I ran over and sure enough he was in tears, virtually not taking a breath he was so upset. His chest was hurting. Kids are amazing. He is surviving on the odd dose of Panadol however we are sure that when he is actively doing something the distraction "takes away the pain" or more realistically is distracting his mind from the pain as when he is asleep and stirs, you can see his hand go straight for his chest and the groans or sobs indicate the pain is still there. He says it is getting better everyday and hopefully he isn't just saying that. In hospital the nurses thought he might just be saying he was ok because he wanted to please so to speak.

So that pretty much brings us up to today (10 days post surgery) and a damn long bit of waffle. Now the nervous part is keeping an eye on weight to ensure not retaining fluid and thus in heart failure as a weight tonight indicated he was 1kg heavier than a few days ago and almost 500g heavier than pre surgery. That would seem a bit unrealistic so I am really glad we have a cardiology review on Tuesday and meanwhile will be keeping a close eye.

In the meantime, bring on those New Years resolutions and see whether they can be kept for more than 24 hours.

Home for Christmas

2008-12-26T14:19:00.002+10:30

Well we made it home for Christmas ... just. Got back to Adelaide late morning on Christmas Eve and not without stress from the airline suggesting we may not be able to travel until they checked everything out. All worked out in the end but not really what you need at that stage. Update on Connor's progress to follow but quick message just to confirm we are at, as they say it, "home beautiful home".

Woken Up by Little Feet Prodding Me

2008-12-21T19:29:00.004+10:30

This morning was a very happy moment. Being dog tired I lay next to Connor's hospital bed in a daze despite him waking about 5am. I held his hand and he soon went back to sleep. Some time later I vaguely recall hearing Connor calling me however then I heard a nurse say "Daddy is really tired .. here I can help" ... ahhh ... music to my ears. Some time later I had this dream that something was prodding me in my legs and it went for some time until I came to consicousness .. well woke up a bit more. There was Connor sitting up in bed, dangling his legs over the side giving me gentle prods with his legs. This must have gone on for quite a few minutes. As I looked at him he greeted me with a big "Good Morning".

He looked unbelievable spritely. I asked if he could walk down to the cafeteria and have breakfast with me and got the all clear. I took a photo of him next to the ride on car down there and sent it to Tarn as a surprise. The doctors rounds saw him restored back to unlimited fluids, monitoring turned off and leads removed and the dressing removed from his wound or "zipper".

An aunty who lives in Melbourne came to visit mum at the apartment this morning and I went back for a shower etc so was catching up as well. I heard a knock at the door and unbelievablly, there was Connor standing outside the door. He had walked most of the way (500m maybe) from the hospital and was out for an hour. As it turned out we went back to the hospital a bit later so he could have his lunch (or that part that he eats) then he came back to the apartment for the rest of the afternoon prior to returning to the hospital tonight.

Without trying to ask for trouble, it almost looks certain we will be arriving home on Christmas Eve with a healthy boy .... there is no other Christmas present that could compare. Yes ... as usual this won't be the last surgery but all going well that should be five to ten years away and we don't need to start thinking about that for hopefully a long time.

Again, thanks to all for messages etc ... it does mean a lot. Despite everything, I hadn't shed a tear since arriving at Melbourne (almost had an anurism during Thursdays problems though with my head feeling like it was going to explode under the stress of seeing his suffering versus knowing what was needed versus trying to rationally know when to say "stop and please review", yet an email from Connor's teacher nearly, cause I won't admit otherwise, brought a couple of tears to my eyes with the beautiful words and Canberra friends Scott and Lea-Anne were like offenders. Thanks everyone and look forward to gradually catching up with everyone.

Another Good Days Progress

2008-12-20T21:42:00.002+10:30

Today was another good day for Connor's recovery. Following the doctors rounds this morning it was decided to remove the Left Atrium (LA) (Ithink) line and the two sets of pacing wires. Despite not using the pacing wires from the ventricles, they were still connected and come clean out of the chest in two spots.

So we now sit with only monitoring of respiratory rate, oxygen saturation and heart rate on a continual basis and blood pressure on a certain numer of hours basis. We are up to 80% on the fluid restriction. In reality our only concern now is that something new pops up or the temperature that has been lingering in the mid 37 degrees is more than just a temperature because of surgery. We have been told we could be discharged as early as tomorrow however I cannot see how we can do such when we would need to reside in an apartment interstate until Wednesday as that is the earliest the airline will accept a patient post surgery.Regardless we still haven't had the wound accessed ie uncovered, he hasn't had a shower yet and has only had four walks so isn't exactly stable as yet. Additionally we don't have all the equipment on hand as we would at home. Last time this happened he got really sick and ended up straight in hospital in Adelaide with a partially collapsed lung. I suspect Monday minimum would be more likely given he is still on continuous monitoring, the wound aspect etc. It was probably more a throw away line by the doctor not recalling exactly where we were at.

Anyway it is still very positive and despite a contradiction in terms of the earliest flight time ie our hospital in Adelaide who organise the flights say Tuesday would be the earliest we could fly because they count surgery as Day 1 where as Melbourne are saying Wednesday (Christmas Eve) is the earliest we can fly as they count surgery as day 0 and say the airlines minimum is seven days post surgery. Can't we get any consistency anywhere? Either way we are currently on track to scrape home to have Santa visit Adelaide rather than Melbourne. Just hope he drags back the suitcase full of goodies that I have a fair idea is in Melbourne just just in case (everyone knows Santa comes where ever you are so we couldn't afford to take a punt that everything would go well with the timing and it is no certainty yet as anyone who has been involved with heart surgery or other major surgery would understand).

Footsteps in the Sand

2008-12-19T22:48:00.002+10:30

Aunty V and Uncle A sent an email yesterday and included the following titled "Footsteps in the Sand". I have seen it before and being religous added to feeling calmer and calmer as the surgery approached (that is the final week and days), I can only say I have no other explanation. I'm sure many people would have their own views and so be it ... but here it is anyway ....

"Footsteps In The Sand One night a man had a dream.
He dreamed he was walking along the beach with the LORD.
Across the sky flashed scenes from his life.
For each scene, he noticed two sets of footprints in the sand:
one belonging to him, and the other to the LORD.
When the last scene of his life flashed before him
he looked back, at the footprints in the sand.
He noticed that many times along the path of his life
there was only one set of footprints.
He also noticed that it happened at the very lowest and saddest times of his life.
This really bothered him and he questioned the LORD about it:
"LORD, you said that once I decided to follow you,
you'd walk with me all the way.
But I have noticed that during the most troublesome times in my life
there is only one set of footprints.
I don't understand why when I needed you most you would leave me."
The LORD replied:
"My son, My precious child, I love you and I would never leave you,
During your times of trial and suffering,
when you see only one set of footprints, it was then that I carried you."
Author unknown"

Surgery Complete and Recovery Begins

2008-12-19T22:04:00.003+10:30

Well my apparent calmness was well founded as the surgery also went like clockwork. We were told we would probably only hear something about 2pm and not to worry if it was longer ... it is only if you get a call much earlier there could be concern. So we did our usual walk down to the shops, got some groceries etc and wandered back for lunch. When my mobile rang at 12:30 (ie 1.5 hours earlier than expected ... I think I sort of packed my pants ... just lucky they weren't white jocks on this particular day).

The surgeon informed us that the surgery was complete and that he had very carefully reconstructed the Mitral valve for the third time meaning Connor had retained his valve. He then indicated that the high pressure or stiffness in the ventricle (a disturbing measurement I believe it was described as during pre-admission discussion with our surgeon) was not present during the surgery although this was qualified as he was under anaesthetic. Having said that though, the conditions he was under for the cardiac catheter which revealed the new high measurement was similar. I qualified this point as this is something that came out of left field a few months back and has been very concerning not knowing what it all might mean but having a rough idea of a few possibilities which are not the sort of thing you spend too much time thinking about. Next he explained the gradient across the Mitral valve had been decreased to 4 which didn't mean jack shite to me at the time however I later learnt that this is as near to normal as it will really ever get and in fact I was told that I would have a gradient of 4. Now that was exciting ... either I have a crappy valve or Connor's is looking considerably good post the surgery (and I know my valves are shite hot of course so all good).

By the time we ventured to the Intensive Care Unit he was looking very comfortable and behaving himself in terms of vital statistics. As normal for him post open heart surgery he required atrial pacing and his Left Atrium Pressure is up. So to this point things were as smooth as silk. Hang on ... I did forget one thing. Connor's nurse was doing some oral hygeine and I was thinking of saying "man he would be pissed if he knew you were doing this" given his love of brushing teeth, when he stark woke up and attempted to pull the ventilator tube and other lines clean out. Now normally this may not be too much of an issue in relation to the ventilator tube however he was still too doped up to breathe on his own so it was not a good thing. Several hands to restrain and a bolus of morphine got everything back on track.

The next day started in a similar vain with discussion that the arterial line could be removed along with the drain, catheter and more than likely the central line. Now whilst there was commotion and some distress, the arterial line came out ok. Work began on the next removal however things turned to crap ... it wouldn't come out and was causing significant pain and trauma. It was hard to watch but we helped restrain and try to calm our little man while a doctor was called. Finally a bit of sedation was given and the surgical staff called. Our stress levels rose significantly when plan B failed and there was suggestion that removal may have to be surgically. This could not be possible. Some dismal aspect required for the complex open heart surgery may now require further surgery to remove because it was stuck. We were peaking to say the least. After several hours he received some Ketamine and plan C worked appearing not to cause any physical scarring or damage. OK ... relief came quick but so did the next issue. All Connor's IVs had tissued and they needed IV access since he still had pacing wires and still needed Heparin.

Our only negative comment is that we flagged this during pre-admission and on the day of surgery and when the IVs tissued yet he was transferred to the ward where they were asked to attempt to gain an IV access. After three attempts Tarnya asked if they could call an for an anaesthetist as the trauma was significant especially just after such a huge surgery. Another doctor was asked to try. Four attempts later (total of 7) I asked them to stop and review as I could not allow any further distress/trauma. The surgeon was called and he agreed that they would have to go without as the truuma was too great given the difficulty to get access. Everyone was stressed and upset and many apologies given however I hope that there is something out of the review that means that the horrific experience will not go so long for other families in the future if there was a similar case. This went down as one of the worst days we have experienced during the six years of Connor's medical experiences given the double wammy and fact we had warned of the difficulties yet the assurances we were given regarding sedation etc did not eventuate.

Today things moved back up and despite Connor looking the sadest I have ever, ever seen in his entire life, he bounced back and his fabulous nurse regained some of his trust by this evening actually allowing Tarn and I and mum and Huddy to have a dinner break together whilst she drew pictures and kept him distracted. It was also fantastic as he took two walks down the corridor to the playroom, one of which was with 16 month old brother Hudson who for a short way held his hand ... it was priceless and a beautiful moment. The trust is not obviously fully back and I suppose one could say "no shit Sherlock" given the events of yesterday. He told the nurse everything was ok and nothing hurt although she got the feel from his look and slowing down his talking to her (yep motor mouth actually went quiet), that he was in pain. He later confided in me that he was and pointed to the chest. Lucky for us (and him) that she was on the ball and gave him pain management based on her observations before it got worse. When I asked why he didn't tell the nurse he said "she had to guess" ... what a classic. So day two post op draws to a close with the overall recovery now back on track and going well but some very unfortunate events occuring which as Tarn and I explained are going to compound future interaction with medicos of every specialist field. It was already bad enough and we had been working on gaining trust and positive aspects but have taken a major step back in this regard.

Thanks to all who have sent messages of support, had Connor in their thoughts and/or prayers etc.

Edit: Forgot to mention that Connor's beautiful smile was back again this afternoon. That just about fixes everything.

Start to Surgery Ran Like Clockwork

2008-12-17T10:32:00.003+10:30

Well with all the massive problems, high profile media coverage etc in relation to surgical cancellations due to lack of Intensive Care Unit (ICU) beds, this morning went like clockwork. We got across to the hospital at 6:45 am and by 8am I was able to go with Connor and wait until he went to sleep. I must say that the team on deck were sensational and accomodating given Connor's fears/anxiety. I don't think his fears are anything unusual given his massive medical history and amount of surgeries/hospital admissions. The pre-med didn't seem quite as effective as in Adelaide for the cardiac catheter and not so many knock knock jokes this time.

The discussion with the surgeon was last thing of the day yesterday and we left the hospital at 6pm after a full day from 9am ... Connor (and Tarn and I were knacked). Basically we do not know what will be happening in the surgery except that they are trying to improve his mitral valve. This is due to some conflicting information in relation to pressures in the left ventricle and the size of the annulus leading into the Mitral valve 'appearing' too small in diameter to take the smallest mechanical valve unless absolutely necessary if repair number three on the valve results in a leaking or damaged valve. Given this is number three surgery on his heart there is significant scar tissue to work around/through etc and the time taken will be longer and risk slighly higher. No further mention of risks because I am feeling very comfortable that all is going well and will go to the best possible outcome. One thing Christian (Connor's surgeon Christian Brizzard) is that the reconstructed Mitral valve has become obstructed with growth as it did after the first reconstruction. However it is good that it lasted four years this time I guess looking at the glass half full perspective and he is confident that they can improve the "gradient" by a number of points (ok .. I hear the jargon but take this as "we can improve the performance of the valve).

The only concern is the conflicting measurements in relation to pressures and we hope and pray that the measurement from the cardiac catheter (more likely to be accurate) was a furfy despite being repeat measured due to the unexpected result as I don't believe that is a particularly great scenario. Let's get past the surgery and get into recovery first anyway. Thanks for all the texts, emails and messages via this forum.

Tim & Tarn

Pre-Admission In Full Swing

2008-12-16T14:07:00.002+10:30

I currently sit in the Family Resource Centre at the Royal Children's Hospital in Melbourne as we are just waiting for Connor's echo and the all important meeting with the surgeon (well the consent meeting is what they require .... our chance to fire off some questions and ensure we understand everything is our view).

We started the morning at 9am and got the paperwork out the way quickly. Chuffed off for a quick chest x-ray (well 2 x rays actually) and then came the bloods. This was not good as was too be expected. Restraint by Tarnya, myself and too nurses whilst the doctor took blood. The doctor did a great job getting good access quickly and taking the blood quickly. Then came physio discussion and tour of the new ward set up and playroom.

Ohh ... I missed that Connor got to have nuggets and chips at McDonalds at lunch time and play on the playground. Yippee dooda... what a great incentive for tomorrow. He is asking about when the operation is ... ie are they going to do the operation now etc and is obviously now quite anxious but all in all coping very well considering age and all the uncertainty of the situation. All is currently on track for surgery tomorow however there is still plenty of hours before then.

We need to be at the hospital at 6:45 am ... yippee again given we didn't hit the hay until after midnight last night getting every one settled.

I hope too, I mean will have good news regarding the surgical outcome soon.

Final Cardiology Pre-Surgery Check

2008-12-12T16:35:00.004+10:30

I took Connor this morning for his final check with his cardiologist prior to our imminent departure for Melbourne. He is remarkedly well so our semi quarantine zone (ie no school for Connor since returning from our holiday nor daycare for Hudson) is appearing to prove worthwhile. Now is all we need to do is avoid the usual bugfest (coughing and sniffling) on the aircraft enroute to Melbourne.

Surgery has now been moved forward a day with pre-admission on 16 December and the acutal surgery scheduled for 17 December so there is still a rediculous chance that we will make it home in time for Christmas.

Surgery Rapidly Approaching

2008-12-08T21:50:00.003+10:30

I have decided to convert the blog to private just yet given Connor's open heart surgery is scheduled for one and a half weeks time and I may use Blogger to maintain the record of progress. We have received overwhelming support from the local community of the last few weeks with Connor finishing school early to go on a quick holiday to Queensland (where else but Wiggles World (Dreamworld) and Wiggle Bay (White Water World)) and in 'semi quarantine' to minimize risk of illness which could post pone the surgery (cause we have enough problems with cancellations without increasing our chances.

Anybody following this blog would know that this will be Connor's third open heart surgery and third attempt to reconstruct the valve. Despite having suggestedly the best valve surgeon in Australia working on Connor, we are informed that there is only a 50/50 chance he will retain his Mitral valve. On the one hand an artificial valve may provide the better performance sought after but on the other that introduces a new set of issues with blood thinning medications and blood testing that goes hand in hand. As we approach the surgery we hope and pray for the perfect outcome with no complications bringing the best possible start to 2009.

I apologise to my overseas blogfriends that I have not been in touch with for some time. 2008 has seen an extraordinary demand on time hence the amount of blogging activity reduced. I sincerely hope to e catch up in the new year and wish you all a safe and happy Christmas and New Year (and in the meantime the best for your cardiac/heart kids for the families of heartkids that read the blog

The Special Zipper to Disappear

2008-11-03T23:56:00.003+10:30

After lengthy consideration, we have for a range of reasons decided that this blog will no longer be publically viewable. It has certainly provided a therapuetic aspect at times, awareness for many people who came in not specifically looking for cardiac related material, but almost as an afterthought a record of the rocky road we have travelled to date.

Thanks for all those that have return visited, those that have left comments etc. I hope to continue to drop past the many blogs that I have spent time at in the last couple of years and developed e friendships with.

Cheers
Tim

Outcome of The Special Zipper Fundraising

2008-11-03T23:42:00.004+10:30

It has been a long time between updates .... we have a little going on. We found out a couple of months ago that Connor's surgeon in Melbourne wants to have a third attempt at reconstructing his Mitral Valve in December. At this point surgery is scheduled for the 18th of December however there are a lot of issues in relation to ICU nurses (lack there of) and thus ICU beds meaning surgeries have been cancelled left right and centre. I love the fact that one article called these kind of heart surgeries "elective". Cause yeah it is just like a knee recon or something like that where you actually have a choice. Connor has about a 50/50 chance of retaining his Mitral valve and having turned six by that stage has reached an awkward age in relation to such a surgery.

Then Tarn's Dad got a couple of pains between his shoulder blades. Wisely decides to see a doctor the next day who says "don't know" but probably safer to get checked out at a cardiac hospital. That was last Monday ... today he had open heart surgery with a quadruple bypass. Non smoker, no family history, no previous symptons!

About a month ago I met with the Chairman of Heartkids SA in relation to the final item for this challenge. What we have decided to do is to hold the Sir Donald Bradman Limited Edition until HeartKids SA have a major event at which time I will present it to them and they will conduct an auction. Out of the 2500 limited edition there are a small number still available so hopefully by the time they are ready there will be none available making the item more desirable.

My aim of this long drawnout challenge was to raise awareness and funds to help ease the financial gaps for families travelling to Melbourne. This aim has been recognised with HeartKids SA recently establishing a fund based on the funds we have already provided along the way of the challenge plus more they have been able to acquire. Whils the cap for benefit is currently low, it is a great start and I feel quite proud to have had a part in flagging the need and doing some grunt work to get the initial dollars into the fund. Ironically we will know be one of those families travelling to Melbourne.

So here ends the challenge in effect as the item will be handed over to Heartkids SA when the time is right by them and the resultant funds will hit the family fund. Thanks to everyone who has followed and participated in the challenge and followed our families trials and tribulations and other junk that appeared on this blog along the way.

How Could Father's Day tops Mother' Day

2008-09-07T15:31:00.004+09:30

Anyone who reads this ~~trash~~ correction blog, may recall the Mother's Day incident this year where I spent the morning at Doctors and then hospital having three pieces of metal removed out of my eyes. If you want to revisit the debacle it can be found here.

So today is Father's Day and the plans were well laid. I had previously been booked for a couple of procedures on the day after Father's Day ... commonly known as an endoscopy and colonoscopy ... or in medical slang ... an 'up' and a 'down'. I have known about this for a few weeks and had the ~~preparation~~ I mean 'cleansing' instructions since that time. So Father's Day was planned with military precision.

The morning would see a journey to Tarnya's parent's house for breakfast ... mmm .. I smell hash browns, bacon, eggs etc and then we would return home by lunchtime where I would start my 'preparation' and fasting. For those not familiar with this process I will drop a few hints. You get three sachets of this powder stuff and at 1 pm the day before procedure you mix the first sachet with a glass of water and kapow ... you have this beautiful white drink. Slowly you sip it over the next fifteen minutes ... slowly that is because every mouthful tastes like the foulest liquid in the history of mankind and if you drank it any quicker I am sure it would come back up rather than "do its wonders". (OK .. i exaggerate a little but give me some room please). Next ... you sit back and relax and drink at least a litre of water before 5 pm where you repeat procedure and again at 9 pm.

But last night in a last minute check of the instructions, in something like a cruel joke (or Kama some might say for my Mother's Day incident), the instructions clearly said that "NO food was to be taken by mouth for BREAKFAST, lunch or dinner the night before the procedure".

I rechecked it and rechecked it and then got Tarnya to check it but the print on that page did not change. Somehow I must have taken that fasting commenced along with the 'cleansing process'.

So this morning the boys brought down their present and cards and I ~~relaxed~~ moped in bed whilst everyone got ready to go to breakfast. I decided not to go as why go through chinese water torture of smelling the food, looking at the food, watching the food .. do I need to go further.

The fun has now begun. One sachet down the hatch and one hour to go to the next one. Being amused by little things I decided to play a game of "how long can we hold on" ... let's just say lucky the computer is only metres from a central depository (toilet). I did say small things amuse small minds but hey, you have to try to come up with some humour on such a crappy day!

City to Bay Training Continues

2008-09-07T15:08:00.003+09:30

The training for the City to Bay has continued and to ensure maximum preparation I have conducted altitude training in Canberra and just last week humidity training in Brisbane. All on a treadmill of course. Ok .. so really I had to go for work but jumped on the treadmill to keep training up. Last run on Friday was an 8km at race pace with several easier 40 - 45 minute runs during the week. The 8kms was about a minute slower than the week before but I was running solo which makes a big difference.

I reckon I could give the under 60 minutes a shake and am quietly confident that I may get under the 57:30 .. my arch nemis of 20 years ago. What worries me a little is that three people in the household are sick with bugs/viruses/fevers etc ... stay away from me snot factories.

City to Bay HeartKids SA Fundraisers

2008-08-19T17:53:00.004+09:30

Below is some of the other people that are also raising money for HeartKids SA through the City to Bay funrun. Unfortunately as detailed below, it would appear the everydayheros site was not set up correctly initially so people that are raising money through their own pages are not showing on the HeartKids SA thermometer. Be assured however that HeartKids SA are receiving the money and an amazing amount has already been raised.

Here's the text from the HeartKids every day hero's page
www.everydayhero.com.au/heartkids_sa

"Thank you to the wonderful people who have set up their independent Hero Pages to raise funds for HeartKids. Due to an initial setup error their efforts are not recorded on the meter to the right but we will keep you updated with a tally on the left! As of Tuesday 19th August HeartKids has received $7728 already from generous donors in support of our City-Bay efforts. All funds raised will be going towards boosting Support Services for our HeartKids SA community. We thank the 'big kids' who donate from their heart to support HeartKids SA. Check out some of our links:
www.everydayhero.com.au/Lucy_Cornes
www.everydayhero.com.au/Lisa_Guy
www.everydayhero.com.au/Braveheartlewis
www.everydayhero.com.au/Cathie_Turner
www.everydayhero.com.au/Kathryn_Pearson
www.everydayhero.com.au/Tim_ONeill
www.everydayhero.com.au/Lee_Morgan
www.everydayhero.com.au/rachaelfrackowski "

Training Continues at All Costs

2008-08-19T17:44:00.002+09:30

The City to Bay gets closer so training cannot stop. An almost lazy 9.5 km per hour run for 35 minutes last night but that's what the training manual said ... "35 minute 'easy' run". I am hoping to get a corporate on board for the run so hopefully we see the fundraising thermometer climb over the next few weeks.

Because I don't think the Adelaide climate is best for building up for this momentous run, I have decided to condition myself interstate for two days. Well actually I need to travel for work purposes but hey .. training cannot stop. Fortunately I know the hotel has a treadmill so it will get some work.

Update on Connor's upcoming surgery: What surgery I say! It's a few months off, we don't have a date as yet so what's the point on dwelling on it. Why not focus on taking him on that trip that he wants to do ... sounds better to me.

City to Bay Training Continues

2008-08-17T22:26:00.004+09:30

The City to Bay gets closer (September 21) and a bit has happened this week.

We had a one hour meeting with our cardiologist to discuss all the aspects surrounding the decision to recommend the third attempt to reconstruct Connor's Mitral valve ie attempt to make long term gains with obvious risks associated however. This is a complex case and as opposed to the other two surgeries where really we had little choice, ie he either had the surgery or didn't survive at birth and at two years was not in good shape either, this time we need to be sure we have all the facts and that we are comfortable that the time is also right. The time is really never right from the perspective of putting your child through such a surgery.

The real difficulty is that Connor is looking so well and healthy and that makes it all the harder.

Anyway, in terms of training for the run, I did about three runs this week. A 30 minute run at an easy pace 10 kms per hour, some interval training with 12 x 200m runs and race pace with 60 seconds break in between, then I ran the 7.75 km lunch time run on Friday that I have done three weeks in a row now. I am really happy to date as the first week I ran about 39:30, the second week 38:30 and this week 37:50. Also did a corporate run on Thursday which was 4kms in a sedentary 21:24. So at this stage if I can continue the training without the knee (either one that is) giving in, I am looking like half a chance to beat the time of 20 odd years previous of 57:30. I am taking a couple of days off as the knee that hasn't been reconstructed was getting a bit sore toward the end of the week.

Anyway, onward and upward. Bring on 21 September ... well .. after a few more weeks of preparation that is. If the energy from the inspiration I have at the moment thinking about what Connor has already and is going to have to go through could be harnessed, I could run our house without power. When the knee is a bit sore or the lungs running a bit short of air, legs a bit heavy ... I just get that mental image and along comes a new burst of energy.

As previously posted, I am running as part of the HeartKids of SA team ...

http://www.everydayhero.com.au/tim_oneill

Edit: Just noticed a visitor coming from Japan. Keisuke if that was/is you, can you please send your latest email address (email address at side of blog) as no one seems to have it.

Swapace.com Offer Assistance

2008-08-07T21:59:00.002+09:30

Thanks goes to SwapAce.com who once again have come to the party and offered assistance in the form of giving more prominent advertising for the Sir Donald Bradman A.C. Commemerative Release for finalising the special zipper up trade challenge.

See the item on Swapace.com here ....

Thanks to the folk at Swapace who have made this happen (AB and JR) and let's hope we find the right person to come across the item now.

I have just located an actual deed for the item which indicates it was purchased for and worth at that point $995. It is now being sold, as detailed on the Swapace listing, for just under $1500 with a minimal number of the limited release left.

Shell Shocked Whilst Donations Come In

2008-08-07T21:48:00.002+09:30

The response to the City to Bay run has been great with $115 raised so far. Thank you to all that has provided the supportive comments and of course the actual gold.

Things took a major turn this week and as a result my inspiration and energy that will be injected prior to and during the actual run has increased ten fold.

Tarnya took a phone call from Connor's cardiologist who informed her that Connor's surgeon in Melbourne would like to have a third attempt at reconstructing his mitral valve with open heart surgery in December or January. I was in a meeting when my phone rang and I couldn't take Tarn's call. When I later listened to her message to call when I had finished our meeting, I knew something was up ... just not that it was going to be this significant.

Again thanks to all for your support as we start preparing for the surgery which will approach very quickly despite being a number of months away. Quite ironic that I was conducting a challenge to assist SA families and currently trying to finalise that challenge with the Sir Don currently advertised on Swapace.com (see post above in relation to support from Swapace).

Training this week has been a bit slack and flat but will bounce back. 25 x 100m at race pace with 30 second intervals completed last night and will look to push at 8kms tomorrow although slightly below race pace (should be 1x 6km run at race pace this week and next before increasing to 7km) .. hmm .. little way to go yet.