Update on Liam's surgery journey

The short recap goes that Liam was born with an Atrial Septal Defect (ASD) which is a hole between the lower two chambers of the heart. An attempt was made in March this year to fix the ASD by catheter but the vein running up from the groin wasn't running straight into the heart as it does for most people and so the procedure had to be abandoned. At that stage we were then preparing for open heart surgery "Septemberish".

We spent the months in between gathering as much information as we could about what exactly the surgery was going to involve and what the immediate and longer term recovery would involve. Liam is a pretty smart kid and he likes to know what is going on. He wanted to know what sort of procedures they were going to do beforehand. He wanted to know what would be sticking out of him afterwards. He wanted to know how long before he'd start to be able to do various activities again. So we got all the information we could and filtered out the small amount he didn't need to know!

He also had a few sessions with a child psychologist at Tauranga Hospital, mainly to help reduce his anxiety around being put to sleep but also just to give him someone else that he could ask questions of. She could then make sure those questions were answered by the right people and also ensure that the psychologists up at Starship were made aware of the plans that her and Liam had discussed.

Eventually in mid September we got word that he had been scheduled in for the second week of the school holidays, immediately after Congress. This was good in a way because it meant missing one less week of school (which believe it or not is a high priority of his!) but did prove challenging because we wanted to keep him home the week prior to avoid bugs but I was out of action all week due to Congress! We then heard early in that week prior that he was being bumped and that the scheduling team would be in touch with a new date. Thankfully he was only pushed out a week and so on the final Sunday of the school holidays we headed up to Ronald McDonald House ready for the pre-op phase on the Monday morning.

Pre-op consisted of chest x-rays, echocardiograms, electrocardiograms and the dreaded blood tests. We would also meet the surgeon and anaesthetist to go through the surgery details and give final consent. The blood tests were a lot less stressful for him than last time and so we were hopeful that the preparation was paying off! Rewards for bravery were McDonalds for dinner and a trip up the Sky Tower before heading back to Ronald McDonald House ready for an early start on the Tuesday.

The plan he had formulated for being put under was that he would take some pre-meds to sedate him prior to the anaesthetic gas. Last time he refused the pre-meds and so was in a right state when it came to the gas mask. The plan went reasonably well. There were four different meds they wanted him to take and he ended up taking three of the four after some discussion and mixing with various foodstuffs to hide the taste. One of his concerns was that if the pre-meds worked too fast he would be asleep for the ride down to theater, so the anaesthetist assured him that if they got the timing right he'd be awake for the ride down and would drift off once there. And drift off he did! Unfortunately when they came to take him in to theatre he awoke and started protesting loudly while being wheeled away. The anaesthetist told us later that she had to jab him in the leg with one last fast-acting sedative to calm him but that he likely wouldn't remember it. Oh but he did!

The actual surgery involves cutting through the sternum to expose the heart and then putting him onto a bypass machine so that they can stop the heart and get inside to suture the ASD shut. While the heart is stopped the bypass machine acts as his heart and lungs to ensure oxygenated blood continues to get to where it's needed. Once the hole is closed the heart is closed up, the sternum is wired back together and the chest is glued closed. Sounds serious but they're doing these things day in and day out and his procedure was considered to be at the simpler end of the heart surgeries they're routinely doing.

After he had been wheeled away Ange and I went for a wander in the Domain, had lunch at the cafe and explored the museum. While in the museum we got the call that the hole had been successfully closed and that he was off bypass and a few hours later we got the word that he was in recovery in ICU and we could come and see him. Arriving in ICU was a bit of a shock, we knew from doing all the research for him what sort of a state he'd be in but it still doesn't quite prepare you. He was still unconscious when we arrived, lying in bed surrounded by machines that made him look all the more small and fragile. He had pads attached to his head to measure brain activity, a nasogastric tube, a breathing tube, a line in his neck, two more lines in each arm, a small drain on one side of his chest, a large drain directly below the (very tidy looking) chest wound, a pacing wire attached directly to the heart and a urinary catheter. 

Most of his attachments would come out quite quickly, by the end of Wednesday (the day after) he only had the three lines and the pacing wire still in him. The drains were removed with the help of some more sedatives but all the other bits and pieces required much patience from the nurses and much step by step explaining of the process to Liam. The pacing wire was the last thing to go and that was on the Friday, just three days after the surgery. Recovery was going very well by all accounts. The next day, Saturday, they were happy to discharge us to Ronald McDonald House to return for a final checkup on Monday at which point we were allowed to head home. On the Sunday (just 5 days after the fact) he was walking around the museum and even wanted to go back to see some stuff we'd missed after a lunch break. That night we went out to celebrate Ange's birthday.

It's now almost four weeks since the surgery date and his progress has been amazing. He has had no pain or discomfort at all and hasn't had pain medication since about two days post surgery. He is supposed to be off school for 4-6 weeks, mostly to allow the wired sternum to heal back together, but also because there is expected to be a certain amount of fatigue as the body recovers from the ordeal. We haven't really seen the fatigue at all! Last week he went back to school for a couple of hours one morning and then went for a 3km walk in the evening, still not tired. The biggest challenge now will be him forgetting that he needs to take it easy, especially because he's not in any discomfort. This week the plan is to attend school every day up until lunch time and see how that goes. The lunch break is certainly the biggest risk that he'll do something he's forgotten he's not supposed to.

Next week he has a followup appointment at the Tauranga Hospital where we'll get a clearer idea of how everything is healing and when he can start returning to athletics, swimming, bouncing on trampolines and climbing on playgrounds. But everything really does seem to have gone very well and he should now be done and dusted as far as the ASD is concerned. No doubt they'll want to check up on him every so often since, as is common for most heart kids, he has other minor heart defects that they'll just want to check remain innocuous.

It's been a long time coming since our GP first heard the heart murmur during a routine 6-week old checkup way back in early 2017. We remain thankful that his condition hasn't held him back and there has never been any urgency to fix the issue, it's all about preventing issues decades down the track for him. He sure is one brave kid though. I doubt I'd cope half as well as he has, even now as an adult let alone when I was his age!

Photo attached is of him dressing up for Melbourne Cup Day at the club three weeks to the day since his surgery