Part Four

November 2008

The day of his surgery had arrived we were to be at the hospital by 7am to check in it wasn’t easy handing Kai over for his 5^th op but we knew it had to be done and that this would be more than likely his last.

And so began a very long day of waiting Ian had said that it would be about 5 to 6 hours. We spent most of this time sitting in the waiting area outside of PICU & Grace pacing up and down anxiously awaiting for the pager to go off to let us know he was back in Intensive care. Eventually we seen Dr Nicholson coming down the hall towards PICU and we knew the op was finished and that he was on his way to see Kai. He stopped and told us that the op had gone relatively well but he had a few issues with locating the artery that needed to be re attached due to his heart not being in the right spot and that he could not use the size graft he wanted which means he may need another cardiac operation later in life in his words “that was fun”.

Half an hour or so later we were allowed in to see Kai once again there was our little man lying there tubes everywhere monitors on and a pace maker wired into his heart just in case it goes into a irregular rhythm. I sat with him for an hour or so then went down stairs to call mum and dad to let them know all was good.

No sooner had I hung up from them my phone was ringing and I knew I don’t know how but something was wrong and it was, it was someone from PICU saying that there was a complication and I should be back the asap all I remember was running and jumping over a child in a wheel chair getting up that ramp to level 3 was all I wanted to do as I got to the top I seen one of the ladies from PICU standing in the corridor waiting for me I knew then, this isn’t good. She came and met me half way down and told me what had happened. Kai had suffered a cardiac arrest and was not looking good as I got back into PICU Lisa was in a chair outside his room which was now closed and curtained off they explained to me that the cardiac arrest was severe and Kai needs to be placed onto ECMO to give his heart time to repair. I stood there not knowing what to do what to say just frozen for a minute, I went to Lisa she explained to me what happened as she was with him at the time of the arrest his nurse was the first to pick it up she noticed his BP dropping and sprang into action hitting the emergency bell and commenced CPR but it wasn’t enough they needed to open his chest and begin internal cardiac massage at that point Lisa was asked to leave the room so they could do what was needed. It was a good hour or so before we spoke to anyone to find out exactly what was going on I spent most of this time pacing the hall looking through the crack in the curtains to see his monitor. Speaking with Dr Chard another cardiac surgeon who placed Kai onto ECMO he explained to us that he had put catheters’ into his heart and one into his aorta to allow his heart time to recover from the arrest the ECMO Machine would pump his blood, oxygenate it and warm it before delivering it back to him. He also said he was very lucky as he was down for a total of 28 minutes after 30 minutes there is not much hope of coming back with or without ECMO. We didn’t get to see Kai just yet as we were heading in Dr Nicholson came rushing in to repair a leak in one of the catheters so another half hour wait before seeing Kai.

The sight that greeted us when we went in was one of sheer shock at the enormity of the ECMO set up seeing Kai there with a machine doing the work of his heart and lungs was terrifying but he was alive that was the main thing. The next 24 to 48hrs were going to be very critical he would have 2 nurses a doctor (intensive care specialist) and a profusionist with him constantly. It was now that the specialist started to explain to us what had gone wrong, it appeared that it was a electric arrest which means some of the nerves were damaged due to the extra handling of Kai`s heart during the surgery and it was time that was needed for those damaged nerves to heal, but also there were risks of major organ damage due the lack of oxygen while he was being placed onto ECMO the main concern was for brain damage but also kidney, liver, bowel failure only time will tell what extent of damage there will be. Also due to the medication he was on to keep his blood thin if there was any bleeding internally to any of his major organs he could be in big trouble.

There were more pumps and syringe drivers running than I had ever seen in Grace it was an amazing sight, this was the ceiling of intensive care there is nowhere to go from here. His blood was tested every hour for clotting levels (INR Levels) to keep the ECMO machine flowing nicely and to keep his blood from clotting in the machine and delivering a blood clot directly to him which could be fatal.

Lisa and I took up a bedside residency with him along with the “team” with one of us going to bed at a time so he was never alone we were ticking off the hours as they passed counting down to that 48hr mark when they would take Kai off of ECMO. They would have to have been the longest 48hrs of our lives but they seemed to go pretty quick. Kai was in constant need of blood products as his blood was so thin he was losing blood at a high rate at its worst it was up to 120mls per hour from his chest drains. The surgical team would come in and re-open his chest to clean it out which involved turning his room into an operating theatre every time sometimes twice a day.

He got through the first 48hrs quite well considering and it was time to take him off ECMO a procedure that would take only an hour or so. We waited outside for only about 15 minutes before the doctor came and gave us some not so good news Kai did not come off ECMO well he kept dropping his BP and his heart would not pick up a normal rhythm so they placed him back onto ECMO and begin another 48hrs or so and try again. This was not the news we wanted to hear this operation was supposed to be the easy one not the bloody hardest but we knew he was a fighter he would come off next time he just needed a bit more time.

So began another countdown and endless amounts of minor surgeries to keep his chest clean the doctors decided to wait an extra 24hrs and try to take him off on the Monday instead of a Sunday so the hospital was at full staff. Come Monday it was time again for the wait to begin but due to surgical commitments they could not do it till the afternoon. This time the doctors seemed confident that he would come off and do well but we were later to find out this was not to be same result as last time BP dropping and heart not willing to kick in and do its bit on its own so back onto ECMO and another 48hrs waiting for the next attempt.

Bloody hell what more has this little guy have to do he has already had a big fight in his first 4months has he got any fight left I bloody hope so. So come Wednesday time to try again the doctors told us that each time they tried he improved slightly each time so he should come off this time hopefully but don’t be surprised if he doesn’t he had been on ECMO for 9 days now normally if you’re not off after 2 you aren’t coming off alive but they must have seen something in him to keep trying, I’m glad they did.

This attempt went a bit longer than the last so as we sat there waiting for what we thought for sure he was off but no he wasn’t but he did improve his BP and his heart did kick in for a little while but slowed back down so back onto ECMO for another attempt come Friday the doctors told us with what they had seen on the last attempt this was going to be the one he would more than likely come off on Friday.

We asked ourselves how much more can we take but we both said we can take as much as it takes but it’s getting a lot harder each time being up and positive each time to be knocked back down again was tough on us but what is Kai going through we know he doesn’t feel anything as he is heavily sedated and on very strong pain meds as well as being totally muscle relaxed he isn’t feeling much but our hearts still ache seeing him go through it.

So another 48hr hour wait, we have become quite close with some of the staff in PICU and a couple of the perfusionists over the past 9 days we are spending about 17 hrs a day at Kai`s bedside learning the ins and outs of ECMO I’m even doing the clot checks. This time it seems so familiar we don’t even notice Mr ECMO pumping away it’s become quite a friendly atmosphere to be in to be honest, with myself and staff members doing coffee runs sharing lollies and jokes it seems weird now thinking back on those times in PICU how relaxed we were given how ill Kai was I suppose it’s how we dealt with just accepted the situation and waited.

Friday 11 days on ECMO time for another attempt to take him off this time we waited a decent amount of time thinking yes he is off but when those doors opened and it was one of the specialists saying that Dr Chard (cardio surgeon) would like to see us in “the room” we knew this was not good. We went in and Dr Chard & one of the intensive care specialists were in the room not looking real happy my heart stopped for a minute thinking that we had lost our little fighter but they were quick to let us know that he was still alive but still on ECMO.

The news he gave us was not much better but stating that this attempt was unsuccessful and they were only going to try one more time and that he felt it would not be successful either, basically come Monday we will take Kai off of ECMO and hand him over to you and let him go in peace and that if we had any family and friends that wanted to see Kia we should have them come in over the weekend. We just sat there not doing anything no words came out no tears nothing I felt totally numb this was it, this was going to be the beginning of my last 48hrs with my son who had fought so hard back in the beginning.

Finally words did come and questions were asked and they were answered not the answers we wanted at times but answered none the less. We left the room to go and be with Kai not knowing what to do we eventually decided that we will stay in the hospital all weekend with Kai and that we have to go home and tell Reece & Micheala I had already spoken to my mum & dad and told them the not so good news and they agreed not to say anything till we got there.

Leaving the hospital was hard knowing that the time we are away is time we may never have with Kai but we had to think of our other children and be with them in their time of need they need to be told by us that there little brother is not well and may not live past Monday. This was the hardest thing I have ever had to do.

Walking in the door at mums felt very uncomfortable Micheala knew something was wrong because this was the first time since Kai had been on ECMO that both of us were home we sat them down and tried to explain it in a way they would understand wasn’t easy but I got through it, just. I don’t think I have ever cried so much as I did that afternoon but I remained somewhat confident that he was coming off and was going to be all right even tho the doctors told us that if he did come off the chances of him not having any sort of brain damage was minimal they had never had a patient on ECMO this long and survive let alone not suffer any damage.

The weekend was the worst of my life making the phone calls to family and friends telling them, was terrible but they came and spent time with Kai offering their prayers and thoughts from far and wide.

Some really weird events happened over that weekend beginning on the Friday night we returned to the hospital, as we pulled in to the car park a nasty storm was building up and when we got into Kai`s room I held his hand and at that exact moment the power went out in the hospital only for a brief second but.

The next instance was when Kai`s godfather came to see him he told us that Monday was the anniversary of his sister’s death and he was praying to her not to take Kai she didn’t need him up there he was wanted more down here while he was doing this at his bedside a nurse from Grace came in to visit and offer her thoughts and prayers her name was Catherine also his sisters name but the really freaky bit was later to be discovered Kai`s nurse that day was also Catherine and the other nurse in the room was also Catherine both with the middle name Louise also his sisters middle name.

The third instance was with myself after a meeting/discussion with Dr Peter Barr who was Kai`s neonatologist he told me to talk to Kai and to listen to what I got back, so I did and what I got back was “I’ll be ok dad“ what this meant I’ve no idea, but I felt better. The final instance was on the Sunday morning I woke up feeling really good I had felt like shit since Friday and really drained but Sunday morning was different I felt full of energy and very positive not upset or down in any way but I also had a great sense of urgency to be with Kai so I spent nearly 3 hrs just sitting there holding his hand with my head down on the bedside. When I finally got up I felt completely drained of all energy even Lisa said I looked very pale I had the worst headache ever and needed to lay down for an hour after which I felt fine, I knew then that all was going to be ok Kai had taken all the energy he needed for Monday from me. I’m not a big believer of any religion or spiritual stuff but that weekend certainly has made me think twice about it.

All weekend staff members from grace were over to offer their prayers and thoughts along with several family members and close friends, I think that weekend was the hardest weekend of our lives but my father really took it hard seeing him so upset was very painful I’ve never seen my dad so down.

Come Sunday afternoon all visitors gone it was just Lisa and I we took hand and foot print of our little man and just sat with him the nurse offered to call in the hospital Chaplin not being a big religious family I was surprised when I said yes please that would be nice thank you. She arrived an hour or so later and spent most of the night just sitting with us saying a few prayers but mainly just being there it actually felt nice to have her there. We were given one of the parents rooms in grace for the night so we could be close to Kai, not much sleep was had but it was good to be close to him I think it was around 4am before we actually said ok we need some sleep it’s going to be a big day tomorrow.

Monday morning came around far too quickly but yet again the procedure was delayed a few hours so that gave us extra time with Kai before they started. The time came when we had to leave to let them start preparing walking out of that room that day was the hardest 10 steps I have ever had to take, our sons life was now in the balance and only he could do it no more medical intervention if he kicked on they would support and help him but if he didn’t, well I don’t want to think about that. We were in the parents room in grace and were told the longer we wait the better, so when that phone rang after just half an hour my heart sank but it was his nurse she told us that he was off and was fighting on and to meet her outside she would explain more then, the feeling of relief was overwhelming we rushed out to meet her and she told us that Kai had come off relatively smoothly but was needing a lot of support with his breathing and also a lot of support for his BP but his heart was kicking on nicely, you bloody ripper I knew he could do it.

It was at least another hour before we went back into PICU and met with Dr Winlaw who gave us the good news Kai was off ECMO and was stable, I think I shocked him a bit by jumping up and kissing him but I couldn’t help it I was just so overwhelmed with joy I couldn’t contain it I even kissed the big pommy perfusionists that was in there, it was ok we were mates by this stage. Wow he had done it our little fighter had beaten the odds yet again, unbeatable odds this kid was tough god help us when he is a teenager.

Walking back into his room and not seeing the ECMO machine was amazing the best feeling ever, but he was not out of danger yet once again the next 24 to 48 hours were even more critical than before because if he doesn’t kick on the option of putting him back on to ECMO was not there now he is off its up to him and the meds to do their job.