Bye Bye Heart Medications

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

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

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.

Connor's Recovery

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

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

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.