December 14^th 2010

The days were long, and the nights even longer. It was all getting too much for me. Zeke was on the edge. He was not well. I was in a mess and didn’t know what to do. Why will no-one listen to me! Around 11am on this day my phone rang. I picked it up and answered. This was the scariest yet most relieving call I had ever received. It was a metabolic specialist named Heidi from the Royal Children’s hospital in Melbourne. She had rang to ask about Zeke. “How is your child Zeke” she said. My initial response was “Not well”, then I proceeded to tell her about all the concerns I had.
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Heidi then said that at three days of age a heel prick test was done on Zeke. This is the newborn screening test that most children have if the parents agree. She then said that there were inconsistencies with his blood work. That there was a serious problem and she had organized an ambulance and it was on its way and I was to put Zeke in it immediately so that he could be taken to the Bendigo Base Hospital.
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Heidi then said she had to go but she would call me back in about 15 minutes. I hung up the phone and didn’t know what to do. I ran frantically into every room of the house with a bag in hand to pack some things. After about 5 minutes I just stopped. I had not even put anything into the bag. I was just running without a clue of what to do. I finally calmed down a little and rang a friend to come over and help me with the children whilst I prepared a bag for Zeke and myself.  She arrived and then I got a phone call back from Heidi. She had said that they had confirmed that Zeke had a rare disease called Maple Syrup Urine Disease. If we do not get him some treatment as soon as possible his brain would swell and potentially kill him.
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Wow! What a shock. I did not know what to say. My first reaction was to jump straight on Google and look it up. My heart was breaking. Reading what could happen to my poor baby was devastating. It was time to call my husband. I rang him and let him know that Heidi had called and that Zeke was unwell as I suspected. The ambulance was coming and I need his dad to come pick Jacob my eldest son up. He was in as much shock as I was. He was working in the truck at the time so he could not even come home to see us off. To even hold his baby for what might be the last time. My heart was breaking for him. Finally I had packed a bag, Corey’s dad Harry had come over to help out with Jacob and the Ambulance arrived. The paramedic was trying to understand the urgency of the situation as he had never heard of this disease before. I too was still a bit confused and not sure what to do.
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The paramedic finally called Heidi and she explained how crucial it was to get him to the hospital as soon as possible. The paramedic named Harry connected Zeke up to the monitors to monitor his breathing, pulse and heart rate. I had to sit on the stretcher with Zeke on my lap as there was no baby seat. Harry handed me an oxygen mask as Zeke was a little short of breath. We started the trip to Bendigo Base hospital. We made it to the next town which is Charlton. Harry stopped to get a car seat from the station as Zeke’s vitals were up and down. It was only Harry, Zeke and I in the Ambulance so I was left to read out all his stats and monitor him along the way. Zeke seemed to be going ok. He had not woken up at all for the whole day.
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He was just sleeping. Well it seemed that way. On the way he had stopped breathing a few times but then would begin again shortly after. This made for about 5 stops on the side of the road so Harry could get out and get in the back to check on Zeke. We made it to Bendigo where we were taken straight into a cubicle in the Emergency Room. There were about 10 doctors and nurses rushing around and poking and prodding him. I cannot even count the amount of times they poked him with a needle to get a cannula in. nearly two hours had passed and still they were not able to get one in. I was pulled aside by one of the leading Doctors and he tried to explain to me what was going on.
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He had been speaking with Heidi and another Specialist Dr. Boneh. He explained further what Maple Syrup Urine Disease was and how it worked. Information overload at that time. I just wanted to be back in the room with Zeke. After speaking with him I went back in with Zeke. It was now a waiting game. We had to wait for the (NET) neonatal emergency transport team to arrive from Melbourne. They arrived around 1am. Hooked Zeke up to a million monitors and we were off. I was asked to sit in the front of the Ambulance as there were three Specialists in the back caring for Zeke whilst on the road. On the journey to the Royal Children’s hospital Zeke had started to stop breathing again. It was crucial that we make it to the hospital straight away. We arrived at the RCH at around 2:30am. We were taken straight to the Neonatal Intensive Care Unit (NICU). Here is where I met the group of metabolic specialists.
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The main Doctor who was explaining the situation to me was Dr. Joy Lee. She is a very lovely and soft spoken woman. She made me aware that Zeke was in a very bad way, that the protein he had been getting since birth was causing his little brain to swell and if they do not act quickly it is very possible that he may die. At this stage Dr. Joy Lee explained that if they cannot reduce the protein in Zeke’s body quickly enough that he would have to be put onto Dialysis. This was all getting so much. I felt so useless, not being able to even touch my baby or take his pain away. 4:30am rolled by and the nurses had stabilised Zeke. The nurses had demanded that I go get some rest as I had not eaten or slept since 7am the morning before. Reluctantly I went around the corner from Zeke’s ward to an emergency accommodation room. I was just about to fall asleep and no sooner then I was in bed did I receive a call from Dr. Joy Lee.
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Her fears had turned into a reality, she said I needed to come back to Zeke at once as he needed to be taken to the major ICU to be started on Dialysis. I jumped up and sprinted to his room. The nurses had just wheeled him out and we were off to ICU.