Part Three

June 2008

It didn’t get any easier Lisa was re admitted to Westmead with a very nasty infection in her wound as well. We were all at the hospital when Lisa took ill with Reece, Micheala & Tyler with us there was no other option than to drop her off at the emergency department and go home leaving her there in the pouring rain I felt like shit I hated myself, but there was nothing else I could do. Kai`s infection didn’t clear as fast as first thought which meant further delay in having the next operation and more VAC Dressing and continued debriding of wound. Lisa`s infection cleared in a few days and she was allowed home again with strict orders to take it easy, as if that was going to happen with a new born in intensive care and three other children, but she recovered well and was soon fighting fit again.

Kai`s wound had healed enough by mid June and his 2^nd surgery was scheduled for the 17^th June a left side BT shunt which would allow blood supply to his left lung by inserting a graft from his aorta to the left pulmonary artery.

Lisa and I both stayed the night in the parents room up on the grace ward so we could be with Kai before he went, as it turned out there was a slight delay in surgery and he was pushed back till the afternoon so we spent the day just sitting with him and waiting for the call, it came soon enough. His nurse then began the pre op procedure which involved wrapping him up like an Egyptian mummy and making sure his open wound was well covered as to not spread the infection that was still present.

Not long after that we were on our way again to theatres and begin another anxious wait this time of about 4 to 5 hours, we gave our little guy a big kiss and wished him well told him we loved him, and so began another nervous wait.

The hours seemed to go by fairly quick and Kai was back in the ward, the surgeon was happy with the result and was confident it would work well until the time came for his definitive heart repair, due to the delay in surgery Lisa and I decided to both stay the night and one of us go home in the morning.

Kais recovered well from this surgery with no immediate complications. The rest of June went by fairly uneventful with Kais progressing well.

July 2008

July got off to a fairly good start but not for long this would prove to be one of the toughest months in Grace. It started with the insertion of a Transpoloric Tube to assist with toleration of feeding as Kai was not tolerating his feeds well. An ultrasound on his diaphragm was done and did not show much but improvement was minimal a week later a CT Angio gram was ordered and showed a diaphragmatic hernia. We received a phone call late on the 15^th with not so good news Kai was desaturating and would more than likely need to be intubated again so with a frantic phone call to Grandpa to come and be with the other children Lisa & myself made a midnight dash out to CHW they had already intubated Kai before we got there and he was stable, sitting there with his nurse and doctor looking at him was not real pleasant he looked so sick. Another week went by with no real improvement so yet another CT Angio was ordered and it showed that Kai`s liver had gone up into his chest cavity and was putting pressure on his lungs and heart making it very difficult to breath. This meant another surgery to remove his liver from his chest cavity and repair his diaphragm this was scheduled for the 21^st.

The surgery went well the surgeons were happy with the results and were able to repair the hernia with a patch and successfully removed his liver from his chest cavity but the recovery did not go so well.

The following day Lisa was in the expressing room and I was sitting with Kai still mildly sedated when the alarm for his oxygen level dropping went off I first thought nothing of it as they go off fairly regularly but looked up to see how low it had actually dropped and seen it had dropped a lot down into the 30`s the next ten minutes are still a bit fuzzy as the events that followed went so fast doctors and nurses came from everywhere bagging Kai trying to get oxygen in but it was not working his sats were dropping into the 20`s by now and things were not looking good I was frozen not knowing what was going on but also knowing what was going on I could be standing here watching him die. The doctor finally got enough pressure with the bag to increase his sats and he wasn’t looking so blue anymore it was at this point I finally took a breath with Kai stable again they put him back on the ventilator with highly increased pressures and ordered an x-ray immediately within 5 minutes the x-ray was done and showed that his right lung had completely collapsed and only having partial blood flow to the left lung via a temporary shunt he was in a bad way. The next 24hrs were critical extra physiotherapy was ordered in an attempt to clear his lung he was also given small doses of steroids to help reduce the inflammation to which Kai responded well and 3 days later on the 25^th he was taken off the ventilator for the last time.

During the next few days it was discovered that he also had Bilateral Ingrunal hernias protruding down into his scrotum the doctors were not too concerned with this and manipulated it back in by hand but it would have to be repaired before being discharged home.

August 2008

Kai was to have his Ingrunal hernias repaired within the first week of this month yet another surgery this would make surgery number 4 in his first 4 months of life most people won’t have 4 surgery’s in their lifetime. The surgery was scheduled for the 7^th so it was another overnight stay for myself and Lisa and another nervous and anxious wait the surgery went very well Dr Thomas said that they had found his appendix in his scrotum but decided not to remove it the recovery period went really well with nothing more than a mild temp increase as a complication. We were very excited as this meant we were very close to taking Kai home.

On the 10^th we were given a Cinderella pass which allowed us to take Kai home for a visit what a great day that was having him home with us and his family was just the best especially after 4 long months of intensive care we knew we were going to take him home for good real soon. But that day was soon over and it was time to go back to grace. This proved to be very hard on Lisa having to return her baby to the hospital after having him home was not easy but the wait to have him home was not far away.

We were told 2 days later that we could go home on the 14^th hell yes we were excited and also nervous at the same time, plans were made for us to room in with Kai on the 13^th and take him home on the 14^th that night we stayed in the hospital and spent most of it taking photos with Kai`s nurses this was a time to remember we were also told that The Sunday Telegraph was interested in doing a small story on Kai and his amazing journey and that the photographer was coming in the morning to take photos.

We spent the night with Kai in one of the parents rooms didn’t sleep much spent most of it watching him sleep, in the morning it was back into the ward to start discharge planning the photographer came and took some photos and we then sat and waited for all of Kai`s discharge papers and medications to come through it seemed to take forever as we were very anxious to get out of there. We had to be re trained in CPR and the insertion of his feeding tube and also be taken through his medication as he was still being weaned off of Morphine a plan had to be put in place that we could handle at home along with his heart meds. Finally after what seemed like forever we were on our way home.

Wow Kai was finally home after 80+ days in intensive care it was now our turn to look after him to say we were scared, nervous, anxious and excited all at the same time would be an understatement medications, feeding tubes, feeding pumps and oxygen levels that we could not monitor all of which were under control by nurses and doctor for the last 4 months were now our job.

It was a short lived visit home as we rushed Kai back in to grace ward 3 days later as he was vomiting all his feeds and also had some bleeding from his bowels tests were done but nothing could be found, after another 4 days we were allowed home yet again but this time we stayed there with Kai progressing and growing well.

September 2008

With Kai moving in the right direction gaining weight life was fairly easy compared to life in Grace Kai had an appointment with his cardiologist mid month where he discovered that his shunt had become “sluggish” which meant that the definitive repair of his heart would have to be moved forward originally planned for January or February 2009 was now going to be needed to be done a lot sooner an appointment was made for us to see Dr Ian Nicholson Kai`s heart surgeon. At this appointment the surgery was described to us in detail and Ian was extremely confident that it was a fairly straight forward procedure that he had performed hundreds of times the surgery was scheduled for the 4^th November.

The rest of the month went by fairly uneventful which was a nice change.

October 2008

The start of October was good but a week or so in Kai seemed to a bit off colour not tolerating his feeds and generally unwell. Late one night he seemed to be having difficulty breathing ad we called an ambulance to get him to hospital as he was looking a bit blue we were taken to Campbelltown hospital with me going in the ambulance and Lisa staying at home with the other children who were in bed asleep. To say the visit to Campbelltown hospital was an interesting one would be an understatement they seemed to be more interested in his history than treating what was wrong now we were place in a bed and pretty much left alone several doctors came and asked a lot of questions but didn’t do much if anything by 3am we were finally moved down to the paediatric ward and put into a isolation room and once again left alone till the morning. By this time I had enough of questions and it wasn’t till I threatened legal action that something was done. Blood taken and some IV fluids started I still wasn’t happy and asked to be transferred over to CHW. Kai was transferred over later that morning with Lisa going with him and me heading home with the others. Several days and a lot of tests later Kai was allowed to go home with no real indication as to what was wrong the doctors put it down to a virus.

The rest of the month was spent at home awaiting his heart repair surgery. On the 31^st Kai was booked in to the pre op clinic which was a full day at CHW with chest x-rays cardiac echo ECG and blood tests. This was also our 10^th wedding anniversary.