Kai Adrian

[image]kai adrian.jpg

This is the story of a very terrifying journey taken by two parents of a baby who several doctors had written off as a lost cause a life that would come to nothing but grief and heartache.

November/December 2007

As per our previous children Lisa was going to Camden hospital to go through the midwives clinic with this pregnancy but due to the fact that she was over 35 she had to go for a transnuchel scan which measures the level of fluid behind the baby’s neck which can indicate a genetic defect.

An appointment was made with Sydney Ultrasound for Women at Liverpool, during the scan we got to see all of bubs parts, his face and hands were very clear they even printed a lovely shot of his face, off to the waiting room to await the results.

We were called into the doctor’s office after a brief wait to be hit with some very terrifying and upsetting news; the scan had revealed a measurement of 6.3mm which was 3 times the normal size for this gestation period and an exomphalos which is an organ or bowel outside the baby.

The results of this gave a high risk of a genetic defect mainly DOWNS SYNDROME and EDWARDS SYNDROME the latter of the 2 is terminal. We were advised that the chances of these were 1in3 for Downs and 1in4 for Edwards which was quite hard to hear.

The doctor (if that was what she was) then advised us strongly that we should terminate the pregnancy as soon as possible as the outlook was very very grim. My initial reaction was 2in3 not Downs & 3in4 not Edwards so I’ll take my chances thanks very much. Lisa’s reaction was of sheer heartbreak to hear that the baby she so dearly wanted was to be taken away so soon. A phone call was made to a specialist doctor for us to discuss these results with, all we got out of that phone call was , hey you’ve already got 3 kids terminate this one and try again, I could have jumped down the phone and smacked that twat fair in the head his tone and attitude totally stunk but he did give us one option of further testing by them to which the blonde bimbo slid a price list under our noses I could have smacked her too they had zero empathy to our situation.

The following 12 to 24hrs were sheer hell for myself and Lisa as to what the hell were we going to do, our original decision was to go ahead with the termination and try again but we wanted to know the odds of this occurring again, so several phone calls were made to the twat specialist as to who we could contact regarding the chances. An appointment was made for the termination through our family doctor it was set for the following Monday.

We finally were given a name and number of a genetic councillor, Dr Alison Colley at Liverpool hospital and an appointment was made to meet with her, what happened in that meeting was one that changed our outlook completely. She offered further testing without the price list, but with what felt to be an honest feeling of wanting to help us make the correct and most informed decision, we had the weekend to decide which way to go.

Over that time it was hell trying to decide which way we go as the longer we left it the harder it was going to be to terminate as after 15 weeks Lisa would have to give birth to a deceased baby and we would have to name the child and have a funeral, not something we really wanted to do and the results from this testing were going to takes us past that time frame.

The decision to go ahead with further testing was agreed upon by the two of us as we could not live with ourselves if they tested the baby after termination, which they were going to do, that it come back negative for a genetic disorder and we had terminated a baby that may have only needed a surgical procedure to fix his exomphalos. An appointment was made with Dr Hollis at Liverpool Foetal Maternal unit was made for further ultrasounds and testing his initial reaction was the same as Dr Twats to terminate but also gave us the option of Transvillis sampling a  procedure to test the chromosomes in the placenta. We decided to go ahead with these tests as uncomfortable as it was going to be for Lisa we needed to know exactly what was wrong genetically as to whether we terminate or not. The samples were taken and a very anxious week was had awaiting results.

We received a call from Dr Colley advising us that the results were in after a longer than expected waits, so off to Liverpool we went. The reason we had to wait a bit longer was that they had tested more samples than normal 90 cells in total were tested and of those 90, 80 came back normal while 10 of them showed a mismatch in chromosomes 3 & 4 where the top of 3 had broken and attached itself to the bottom of 4 and vice versa NO DEFECT IN 13 OR 18 = NO DOWNS SYNDROME OR EDWARDS SYNDROME GREAT NEWS TO OUR EARS. But what of these 3 & 4 abnormalities, well as Dr Colley put it, it may be a genetic throw back from one of us or just a mishap in the construction phase of the placenta, would it cause any defects not likely, so it was the right decision to make were going full steam ahead with this little fella, yes it’s a boy chromosome testing don’t make mistakes in that department. Lisa and I were both tested to see if it was a genetic throw back or not it wasn’t, Lisa and myself were both normal as far as genetics go. We were to be closely monitored during the term of the pregnancy at Liverpool foetal maternal unit every 3 weeks.

So into Christmas we go and what an interesting time that proved to be we arrived home after a visit to Liverpool to find a letter informing us that the house we were renting was going on the market and we would need to move, Lisa didn’t take this news well a sick baby, Christmas coming up fast and having to move not long into the new year and me starting a new job come the first week of the new year. With great help from our real estate a house was found just before Christmas and we were to move in come the first week of 2008. The week or so leading into Christmas were spent packing which in itself proved not so good as my mother had suffered a very mild stoke during that period which was only very mild but still it was enough to cause some great concern amongst the family. (She is fine now no further complications).

January 2008

The move into the new house went well with the removalist guys doing a great job all out and into the new place in one day. Our visits to Liverpool continued around the 20 week mark an ultrasound picked up a heart defect in the little fella what appeared to be a hole between the lower chambers this news was not taken well by either of us. Dr Hollis requested a meeting with us as I was not present at this ultrasound to discuss the viability of continuing with the pregnancy. During this meeting we were informed once again that the best we could do was to terminate as the outlook now was even worse given the 3 factors present. Those being HIGH TRANSNUCHEL FLUID, EXOMPHALOS, HEART DEFECT. I asked Dr Hollis can you tell me 100% that our baby will not survive to which he replied NO to which I then replied “well were not going to terminate now we are going to give this little fella every chance at life he deserves it is not up to us to decide his fate”. I think this shocked him a bit, but he was willing to continue through this with us and referred us to a cardiac specialist at The Children’s Hospital at Westmead, Dr Sholler and also arranged for an exomphalos specialist from Randwick Children’s Hospital to see us on our next visit to Liverpool.

The following visit with Dr Hollis and the specialist from Randwick was not real pleasant as he was of the opinion that the little fella would have to be born early as he would become stressed and a risk was present that it may rupture the exomphalos during birth at full term if he made it that far as it was now clear that the exomphalos contained his liver. We still remained confident that our little guy was still in there with a chance as he was growing and developing perfectly normal apart from a few things that weren’t quite right.

An appointment with cardiac specialist Dr Sholler at Westmead was made for 22weks to confirm the heart defect to which he did and also stated that it is operable but given the other problems it may not be successful another appointment was made for 26 weeks to allow bub to grow a bit so he could see a bit clearer what exactly was going on.

February/March 2008

Visits continued to Liverpool with a bit of trepidation as to what the hell are they gonna find next but nothing further was found on the little fella but with Lisa this time. They suddenly realized that Lisa had not been checked or booked into any clinic as yet and being such a difficult pregnancy Liverpool could not do it so arrangements were made to be booked into Westmead’s clinic for the remainder of the pregnancy this put an end to our visits to Liverpool and our journeys out to Westmead began.

Our first visit with the clinic nurses at Westmead seen us put into the highest risk bracket for pregnancy’s there is and we were immediately referred to a high risk obstetrics specialist Dr Indika Alakahoon who would see us all the way thru the remaining duration of the pregnancy we became a blue star patient of hers which meant we were given top priority. Visits to Westmead continued every 2 weeks with ultrasounds closely monitoring the exomphalos and heart. Life at home continued to be fairly non eventful with no further hiccups although the stress and worry of what will happen come May growing. Dr Alakahoon was very confident that the little fella would make it full term and was very supportive throughout the entire time.

The follow up visit with Dr Sholler at 26 weeks confirmed a heart condition known as TETRALOGY OF FALLOT, which is, a hole in the lower chamber between the left and right chambers which allows oxygenated blood to mix with non oxygenated blood and a narrowing of the main artery that feeds the left lung. Both of which he seemed confident in repairing surgically, but as with nearly all the other doctors he questioned the viability of continuing the pregnancy given so many risk factors that were present, and the great risk of some other genetic abnormality that is usually associated with all of them but we told him we were going on, he was surprised I think but was willing to continue with us.

February also was a big highlight for me as IRON MAIDEN were finally touring Australia after 16yrs, it was going to be a big 2 weeks. Lisa and I both flew to Melbourne to see their first show and a huge global meet up but that’s another story yet to be written let’s just say it was 2 weeks well needed for both of us to have our minds elsewhere for a while was very relieving.

April 2008

As it grew closer to the little fellas due date our thoughts were never far from what the hell is gonna happen, is he gonna live or die, will he a have a major genetic defect, is he gonna come early on his own, and were gonna be an hour away from Westmead. What are we gonna do if Lisa goes into labour while I’m at work another hour away from home but 2hrs away from the hospital our anxiety levels were at an all time high I think, but I was to learn later that yes they can go higher. We decided on his name Kai Adrian.

We were referred to Dr Shun a paediatric organ specialist and surgeon our appointment with him was made the same day we were to tour the children's hospital specifically GRACE WARD which is neonatal intensive care. The tour of GRACE WARD was very daunting seeing those sick tiny new born babies knowing, no hoping that our baby makes it there because if he does make it there we then know he has a chance.

The appointment with Dr Shun was very short but oh so devastating as his opinion was that if he made it full term and was born alive that his chances of survival were only 1 in 4, due the high risk of putting his liver back in and the complications that could arise from it. But 1 in 4 is better than none Lisa did not take this well as I feel the reality of our baby boy surviving had hit home and hard.

Visits to Westmead become a weekly event and on one of those visits a drop in his heart trace was found and it was decided that Lisa was to visit 3 times a week for close heart monitoring for the duration of the pregnancy so, Tuesday was heart monitoring and general checks with Dr Alakahoon, Friday was heart monitoring and ultrasounds and Sunday was a short day with just a heart monitoring done.  All heart monitoring sessions showed no further complications.

It was discussed with Dr Alakahoon the prospect of admitting Lisa to hospital a few weeks earlier just in case Kai decided for himself that it was time to meet the world and that we would not make it to the hospital on time it was decided that Lisa was to be admitted to Westmead hospitals women’s health ward at 38 weeks with a c/section planned for the 27th of May only 1 day short of 40weeks hopefully that would give Kai the best shot at survival.

May 2008

The visits to Westmead continued every Tuesday, Friday and Sunday with all being perfectly normal Kai`s growth and development continued to give us hope that he was gonna be ok.

Lisa was admitted to hospital on the 16th May eleven days before the c/section was booked during the 11 days she was in hospital we had her aunt fly down from Qld to help out around the house and with Reece(12), Micheala(10) and Tyler(21months) our other 3 beautiful children. This proved to be a bit tougher than expected but we got through it without any major problems. Visits out to mum became an adventure to say the least but still very enjoyable.

26th May 2008

The day before the BIG day was a very nervous and anxious time for both of us with me staying the night with Lisa in her room the nurses there were fantastic in organizing me a fold out bed for the night we spent most of the night talking before Lisa had her sedative to help her sleep. I didn’t sleep much that night with so many things running around in my head so many scenarios what will tomorrow bring joy or grief only time will tell now.

27th May 2008

Well the big day had arrived where many said it wouldn’t it did. We were woken at 6am time for Lisa to shower and be ready to go to theatre for the c/section, Lisa had ordered breakfast for me the day before but all I could manage to eat was a small piece of sausage. Lisa had showered and gotten dressed in her beautiful hospital gown, we spent most of the time in the room waiting for the call that they were ready for her holding each other and just chatting, had enough time for a few photos of Lisa’s belly and a nice one of the 2 of us, the call came and we were off.

Walking beside Lisa on the way down to theatres was rather daunting knowing we were soon to find out had our gamble with our son paid off or not. We arrived in the theatres to be checked in, Lisa went one way and I the other to get my scrubs on (not real attractive) as Lisa had chosen to go for the spinal block it meant I could be in there during the c/section and see my son come out so the unattractive scrubs were easy to wear.

We met up again just outside the actual theatre with Lisa having her pre op checks done and meeting with the anaesthesiologist who would do the spinal block and Dr Alakahoon who would perform the c/section and bring our little man into the world. During this time I was feeling rather ill and faint I think the anxiety of what was to come got a bit much, I wasn’t telling anybody just in case they didn’t allow me in. Lisa was taken in and I had to wait for what felt like an eternity but was probably only 10minutes but I can tell you it felt a hell of a lot longer.

Finally they came and got me to come in and sit at Lisa's head with a curtain separating us from the view of her belly. Then came the moment of truth the moment we had been waiting 9months for they dropped the curtain and said here he comes. My heart was pounding so hard I thought shit I’m gonna pass out here and miss it but I didn’t thank god, the camera around my neck was ready to go and there he was. Wow he looked absolutely beautiful he came out with a cry that small noise settled my anxiety and nervousness in one hit and I was snapping away like a Chinese tourist at the opera house the tears were flowing like mad but they were tears of joy and relief. The umbilical cord was wrapped around his neck twice and was very tight a small moment of panic hit me while I watched they tried to untangle it but couldn’t  Dr Alakahoon just yelled cut it and within seconds it was cut and off his neck and another small cry echoed in the room.

 Over he went to the neonatal team who were amazed along with everyone in the room that he was breathing on his own and had good colour my head felt like a laughing clown at the Easter show looking at him then back to Lisa reassuring her that our little man was fine and he was, so what he had a bit of a bump on his belly but who cares he was perfect in every way no physical sign of a genetic defect as a lot of doctors had kept telling us just a bump on his belly which was now wrapped in glad wrap to keep moist. The feelings I had in that room I could not describe, but we were no way out of danger yet but one step closer he had made it out, and was now in the hands of the neo natal team and surgeons to get him the rest of the way.

Now came the time for Kai to be taken to the nicu at Westmead to be assessed and stabilized ready to be transferred to GRACE WARD at the children's hospital with a quick” he’s ok baby I love you” to Lisa we were out the door and on our way. When we arrived at nice he was quickly surrounded by doctors, nurses and specialist staff checking him over fully they were very happy he was very stable and within minutes he was off to Grace ward at the children's hospital I was supposed to go with him, they were Lisa's orders but the doc`s said there was no need as he was very stable so I decided to stay and wait for Lisa to come back to maternity and let her know that he is doing fine as I know hearing it from me would ease her worry level.

I was taken to one of the birthing suites to change back out of the scrubs and to have a few minutes to settle myself and of course get on the phone to Reece, Micheala, Grandma and Grandpa to let them know we’re off to a good start with Kai coming into this world way better than a lot of doctors had told us.

I met up with Lisa’s best friend Bernadette coming out of the delivery suite we went up to the maternity to wait for Lisa to come up from recovery it seemed to take forever for her to arrive. When she did finally get up there her first words to me were “what are you doing here you're supposed to be over with Kai” to which I replied “he’s fine baby doing really well very stable and breathing on his own”. I sat with Lisa for about half an hour or so I was so proud of her and myself for sticking to our decision now that Kai was here and doing so well. Bernadette offered to stay with Lisa for a while so I could take off to the children's hospital to check on Kai which was a great offer considering she had not slept as she come from a night shift of her own she is a intensive care nurse at Canterbury or Bankstown hospital.

Upon my arrival at grace ward I was greeted with the sight of Kai surrounded by doctors my initial reaction was oh shit what has happened I should have stayed with him but that was soon gone as nurses congratulated me on becoming a new dad and that my boy was doing fine, he was on a small amount of oxygen but apart from that and a few leads coming off him to monitor his heart and various vital signs he was going great guns very stable. I spent a bit of time with him taking photos and even recorded a video of him crying on my phone to show Lisa and put her mind at ease that he really is ok. Back to Lisa after about an hour or so, she is such a wonderful woman I cannot describe how happy and proud I am that she is my wife and wonderful mother to my children.

The next few hours were spent with Lisa awaiting a clearance from someone to allow her to go visit our little man Lisa was rather keen to go as soon as she got there but after major abdominal surgery she had to wait which she didn’t really like but it was for the best. We finally got the ok to go later in the afternoon and could only go with a nurse to keep an eye on Lisa and only for 20 minutes which Lisa extended to nearly an hour, but it’s so hard to keep a mother away from her new born baby. During this time Lisa got to hold Kai which was excellent and we were informed that he will more than likely be going for his first major operation to try and fix his belly that night, not even 24hrs old and off for major surgery that was totally frightening, but good at the same time as the doctors were confident enough that he was doing so well and was strong enough to handle it and come out ok.

It was a tense time waiting to hear from them that he was going as were now back at maternity awaiting a call to let us know when he was off for his operation. Around 7:30pm we received a message that he was not going tonight as he was on the emergency list and a few more urgent cases had jumped in front of him, which was a bit hard to take as we felt our little guy was a fairly urgent case but it was also a good sign that he was still doing so good that he could wait. We were told he would be second on the surgical list for the morning.

Off to be with him again this time without a nurse just myself and Lisa with me driving the hospital taxi (wheelchair) not a real easy walk it is over 1km through corridors and security doors pushing a wheelchair isn’t fun but it seemed so insignificant I never really noticed it then. Our little angel was so beautiful we sat with him and spoke to several doctors, specialists and research people he was doing good real good in fact. Time goes so fast sitting there with him it was 11pm before we knew it and it was time to go as Lisa was supposed to be back by 9 or 10 so back into the taxi she went. As we arrived back at maternity the boss nurse was standing at the reception area not looking real happy and said “I was just about to send a search party out for you” we didn’t care we had spent some valuable time with our new bub. Arrangements were made for me to stay the night with Lisa, it was a rough night with nurses coming and going not much sleep was had by either of us especially knowing our little man was to go for such major surgery and not even 24hrs old yet.

28th May 2008

Up and out early to go and be with Kai before his operation to put his liver back in, surgeons were fairly confident that it would go back in, in one go without having any major problems. If it didn’t they would put it in a silo which is like a sock and hang it from the top of his bed and gently apply pressure and let gravity do its work. Sitting there with him waiting for the call from theatre’s that they were ready for him were full of emotion, not knowing what was going to happen as this was the operation the surgeon had given him only a 1 in 4 chance of surviving so many things could go wrong our little man’s life was now in someone else’s hands, and for Lisa that was hard after taking care of him, getting him big and strong so he could handle this had been her job for the past 9months now it was someone else's turn to get him the next step of a very long journey.

Around 10:30 the call came through that the theatres were ready for him to come down, the nurses then began readying him for surgery wrapping him up like a mummy to keep him warm and connecting a portable monitor, oxygen bottles and various other bits and pieces to have him as ready as he was going to be. His nurse (Emily) was to go into theatre with him and keep a close eye on him, this was her first time with such an operation. The porter arrived about 11 to take him down we could go with him to the pre op area to say good luck, this was one of the toughest moments of our lives I think giving him a kiss and telling him we love him not knowing if he would make it through the op was bloody scary.

Lisa was due back at Westmead for her medication and checks, I walked her back to her room it was a very quiet walk back with the both of us lost in our own thoughts and prayers for Kai. Once back there I was off to make a few phone calls to let family and friends know what was going on, and hunt down some food Lisa was having lunch and a check of her wound so would be ok for a bit, but I didn’t want to leave her too long.

Phone calls and food out of the way I went back to Lisa to wait for our parents’ pager to go off letting us know our little fighter was back on the ward, it was going to be a while yet the surgeons had said 3 to 4 hrs before he would be back. We spent most of this time trying to get some sleep as very little was had in the last 48hrs.

I left Lisa to sleep and went outside of the ward to stretch out on the lounge, wasn’t there long and the pager was buzzing Kai was back at grace ward, time to move and see our little fighter, was he ok, did it go well, did we get our 1in4 chance. It was a quick trip down the long corridor between Westmead and the Children’s Hospital and there he was our little man all put back together the surgeon was there and told us it was a success the team had managed to get his liver all back in.

The sight of him lying there totally muscle relaxed and fully ventilated was bloody scary leads wires tubes everywhere and him not able to move a muscle totally helpless when he did flinch or flicker his eyes even the slightest the nurses were on the spot to give him another dose of muscle relaxant as it would not be good if he started moving about due the pressure on his wound and belly they were also monitoring bladder pressure due the pressure build up in his belly from putting his liver back in.

The next few hours were spent just sitting with our little guy hoping and praying for a full recovery and moving on with the next major surgery for him a left BT shunt for a disconnected Left Pulmonary Artery in a few weeks. We spent most of the night with Kai finally getting back to Westmead around midnight with me sleeping on the lounge in Lisa's room.

29th May 2008

Up early and over to the Grace Ward to see Kai, he is doing well still muscle relaxed, it`s hard to see him like this he is basically paralysed ifhis eyes even flicker briefly the  nurses give him more relaxant, it’s too risky for him to be moving about just yet as there is a lot of pressure on his abdominal cavity after putting his liver back in to a cavity that is small due to not having it there during development. The rest of the day was spent sitting with him, but it was not going well he developed a nasty infection in the wound which resulted in a few of the stiches to be removed and the wound left open and treated with a VAC dressing which was a first for a neonate, due to this infection it was going to delay any temporary repair of his heart which was going to be a BT Shunt which involved placing a tubular graft from his aorta to his left pulmonary artery. The last few days of May went by with very little complications just waiting for the infection to clear and be given the all clear for the BT shunt to go ahead. Still wasn’t an easy time being separated from our little guy in his 1st week of life totally sucked but we knew it had to be this way and it would all be good soon.

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 2nd surgery was scheduled for the 17th 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 15th 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 21st.

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 25th 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 7th 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 10th 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 14th hell yes we were excited and also nervous at the same time, plans were made for us to room in with Kai on the 13th and take him home on the 14th 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 i n 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 4th 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 31st 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 10th wedding anniversary.

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 5th 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 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.


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