December 15^th 2010

What a long day it was yesterday. The thought of losing my precious little baby was killing me. I had so many emotions running through my body. I was still all on my own in the ICU with Zeke. Waiting for Zeke’s father to come down from the country where we were living at the time. The morning was full of just waiting. Zeke was put into a coma. He just lays there. Tubes, wires and cannula’s everywhere. Even though he had so much equipment attached to him I could still not help but think how lucky I was to have another beautiful little angel. He looked so peaceful. My girlfriend Tamara came in to see me. I was feeling all alone and needed some company. She was a massive support at that time and I cannot thank you enough. Next to come was my Step Mother Annette. She just held me. To have that comfort of your mother in such a time of need was unexplainable. Annette to have felt the sadness and pain of such a disease so I knew she, better than others could understand what I was feeling. We went into the tea room and just sat there for a while. Not having to say anything was the best feeling. Just to be quiet and not have to think for a moment. Then I explained as much as I could about what was hurting her Grandchild. Information overload. But she understood my pain which was all that mattered. Then Finally Zeke’s father arrived. I offered to show him a picture of Zeke before he entered the room as it was not a welcoming sight. He did not want to see a picture he just wanted to see his little boy. We walked into the ICU hand in hand and then over to Zeke. Corey just sobbed. It was a massive shock to see your baby one day who seemed to be ok, to seeing him all wired up and not responsive. This day was one of the hardest. Heidi the Metabolic specialist then took Corey and me away to a room to explain to Corey what was happening as he only knew what I had told him. She explained every detail about how the protein build up in his body was acting as a kind of poison in his body so they need to filter his blood through dialysis to get rid of the toxins. We were asked to leave Zeke whilst they did a small incision in the right side of his groin. This is where they would be accessing the veins to take out, filter then put the cleaned blood back into the vein. Zeke was in a coma, which means he needed to be on life support. His little lungs could not cope so the ventilator was doing all the work for him. For the first day he had shown no signs of spontaneous breaths. He was just resting and letting the machine do all the work. The hospital had arranged for me to stay at the Ronald McDonald house whilst Zeke was in hospital. I would stay in the ICU with him all day and night until I was ordered to go get some sleep. The staff and other occupants at the Ronald McDonald house were lovely and very supportive. This night there was a dinner at the house that was organised by volunteers for patients and their families. Corey and I had just sat down to dinner when I got a call from my dad; all I could make out from the call was Zeke, and code blue. Dad was in hysterics. I jumped up and said we have to go, threw my plate on a bench and ran over to the hospital. As we arrived in ICU dad was distraught, the doctors explained that Zeke’s blood pressure had dropped to 8. They were soon able to correct this problem and he was ok. Another scary moment and i’m so sad my poor dad had to witness it.