Day T-0 ended way past midnight. The day had been “surreal” – a word that we began to use a lot. Before this day we talked about organ donation all the time – and glibly spoke about Matthew’s need for a “full motor change”. Now it was real and it was happening! To be honest, we had been running on autopilot for most of Day T-0, even our WhatsApp communications with family and close friends were very factual updates on how Matthew was doing and the operation’s progress, not how we were feeling – I mean, how were we feeling? It had been really hard while Matthew was in the ward and theatre waiting area to keep our composure and act like it was the same as any other hospital visit, so as not to cause any anxiety in Matthew. We kept this face on up right until when Matthew finally went to theatre and then his last calls of “I love you, I love you” broke the emotional dam and we both cried. That was about fourteen hours before. So after one last visit to the ICU window to see our “very critical and unstable” son on T-0 we finally climbed onto the beds at 02:00 am and slept soundly…. yes, right, like that was going to happen!
It was 04:00 am in the morning; the sunlight was just creeping over the horizon and we were awake. Two hours sleep didn’t feel like much, but it was the lower priority. A quick shower, and then we were back on our way to the Surgical ICU. Officially it was T+1 but little had changed – the nurses still wore sombre faces – at least the parts we could see above the face masks. The monitors maintained a steady wave showing the high heart rate while the ventilator fed Matthew every breath he needed. It turned out that two of Matthew’s doctors had also slept the night in the hospital, the surgeon in the cubicle next to Matthew’s room, so they could be on hand should they be needed. The night sister told us that everyone was desperately worried about Matthew as he had a very difficult night and the doctor’s had been up almost every hour to check on him. It is easy for the darkness of the situation to creep over you when you hear this.
A heap of machines were packed against the walls in Matthew’s ICU cubicle. The transplant team had ensured that they were equipped for any possibility. We were told that not only was there a pace maker ready and waiting, but also two ventilators in case each lung needed to be ventilated separately, an ECMO machine (which is basically a life support machine) and also heaps of other equipment on standby. It looked like we were going to war – and I guess in some ways we were in a fight for a life. For a non-medical person it looked pretty scary and because the team wanted it there, it gave us a barometer of what the team thought of Matthew’s condition. They hadn’t put him on life support but were obviously monitoring him closely, and he wasn’t showing much sign of improving. There is a general understanding that the first 72 hours after major surgery is the first critical window to get through. We began counting them in our minds, and like a watched kettle never boils, so those watched hours dragged for us too!
We both stood outside the glass door cubicle and looked at our beautiful son. (Matthew won’t like me calling him that!) The sun was breaking through and in the light we could see he was no longer blue, but he was now severely endemitis (swollen). In fact, he looked like a rugby player front ranker – the area that was most swollen was around his neck area, making it seem like he had no neck! Seeing Matthew lying like that gave us flash backs to the first week of Matthew’s life when he lay recovering after open heart surgery. They tell us that memoires are burned in our brains by emotions, the more emotions, the clearer the memories, and we could clearly remember him lying with chest open and his little heart beating under a white covering. Just like 19 years ago, the distress and questions bubbled up inside – would our son survive?
Having said that, Matthew had demonstrated to us repeatedly over the last 19 years that he never followed the “usual” medical route. In fact, Matthew is a bit of a medical conundrum and so it is seldom that any operation, intervention or recovery went exactly as expected or planned. Many years ago I expressed frustration over something that had happened in an operation and I challenged the cardiologists as to why he had not told us this could happen. He responded that this condition only happened in 3% of cases. Yes, Matthew beats the three percent odds every time. Although our eyes didn’t like what we were seeing as we stood looking at out 19 year old, we both had this strange peace in our hearts – “we knew that we knew that we knew” that Matthew would pull through.
What we haven’t mentioned is that Matthew’s operation was made more complicated by of his previous operations. As a consequence of the previous surgeries his heart and lungs were now stuck to his ribcage and chest wall. This meant that removing his organs would result in hundreds of bleeding sites in his chest, all which need to be managed. As a consequence of this, the surgeons knew that Matthew would probably require a large amount of blood and blood products (plasma and platelets), not only during the operation but also during the first couple of post-operative days. The SANBS usually keeps 5 days stock in KwaZulu Natal but at this time they were down to a critical level of just over 2 days stock. This often happens at this time of the year because University and high school students, who are one of the biggest pool of donors, are busy writing exams and often don’t get around to blood donation. This makes a significant dent in blood stock levels and with the festive season coming up this is not a good situation to be in. In most hospitals, elective surgery is usually postponed but Matthew’s operation was not one that could be delayed. We are deeply grateful to the SANBS as when they did basically run out, they couriered in life saving supplies from Gauteng.
It was just before the 07:00 am shift change. We have been up three hours and it seemed like a long day already! To get out of the nurses way we returned to what had become our second home – the comfort room near the entrance to the ICU. The comfort room is located off the main corridor where the passage ways split – one to the ICU, the other towards the operating theatre. As we approached the room, we came across the full set of Matthew’s transplant team doctors – the two surgeons, the two cardiologists and the anaesthetist standing in the corridor discussing the way forward on Matthew. Their faces were as sombre as the nurses. They told us how complicated the surgery had been and that Matthew was not in a good place. We knew that the doctors had expected a tough operation but the surgeon, Mr Kleinloog, and anaesthetist, Dr Padoa, said that it had been their most challenging to date. In fact, they were both relieved that Matthew had survived the night.
Since Brian and I had just talked about how we both sensed Matthew would make it, I told the transplant team that I didn’t know what they were worrying about – Matthew was a fighter and he would make it. To be honest, the doctor’s faces looked sceptical. There was a look in their eyes that said “But you don’t know how bad he is.”
As the hours crept by, we visited Matthew regularly (from our view point outside the glass door) to pray for him. By lunch time there was a sense that a mist of heaviness had been rolled away and the mood in the room became hopeful. The whole situation in the ICU had miraculously begun to change. As the afternoon progressed, Matthew appeared to be medically doing a whole lot better, his heart and lungs were beginning to hold their own, his blood pressure stabilised and his outputs (drains and urine) were also good. We knew that we were still in the seventy two hour window and that Matthew’s condition would still need to be managed minute by minute; but it seemed he was maintaining his pressures and nothing was dipping.
The doctors had reduced the amount of sedation Matthew was receiving after lunch as they wanted Matthew to reach a point of being “semi-awake”. When Mr Kleinloog came back to check, Matthew began reacting to verbal instructions! Finally he told Matthew to wave to us behind the glass door and he responded with a groggy flutter of the hand. That is when you realise that you have been holding your breathe for nearly 30 hours; suddenly you can breathe again and a weight falls from your shoulders. Despite being on a heap of various medications and a long way of recovery to go, Matthew had come through the operation and was alive. It was crying time again!
It was late in the afternoon when we saw the surgeon again, and he was very surprised at Matthew’s improving condition. All his blood results and vital signs had improved and even Matthew was looking a whole lot better. We joked with Mr Kleinloog that he was actually hard pressed not to smile when he told us his observations. A few more members of the transplant team also visited Matthew and we could see that they wanted to maintain their sombre face “just in case”, but the corners of their mouths were twitching up in cautious smiles.
As we ended off transplant day +1, Brian wrote this message to family and friends –
“Sometimes we get so caught up in the immediate that we forget to step back and see the full picture. We knew that Matthew’s transplant was an absolute miracle – there are so many reasons why he shouldn’t have made it but he did.” Therefore:
- We are so grateful to the donor family who gave this “gift of life” at the point of their greatest grief. This gift has given our son a second chance at life.
- We are deeply grateful to the medical team who worked about eighteen hours in the transplant process. They are the second half of enabling our son to have a second chance at life.
- Thirdly, we are incredibly grateful to each individual who donates, blood, platelets and plasma as this also helped to save our son’s life.
- To our friends and family who have stood by us, prayed for Matthew, encouraged us, and helped in many ways – we have really needed your support to carry us. The road is still a long one to walk – but thank you for walking with us.
- Most importantly, we are grateful to the Lord whose ways are not our ways, but we trust in him having a plan and a future for Matthew.
Brian and Janet Legemaate
T+2 to follow – we find out a lot more scary details of the operation…