Surgery Complete and Recovery Begins

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.