Filling time in hospital is something that we never think we will need to actually do. Until something happens that you just don’t plan for…. Recently the cosmic universe decided to throw a curveball at us the size of a planet. I liken it to walking down a sidewalk blissfully listening to some classic jazz and getting slammed in your six by a semi-trailer.
My son of 20 months was diagnosed with a genetic disorder called Chronic Granulomas Disease or CGD.
4 weeks ago (16th April) I had no idea what CGD was let alone that a mere 1 in 200,000 are diagnosed with it. But to find out that my little guy had this genetic disorder was like getting slapped in the face with a house brick and asked if that tickled. So we were all off to Sydney Children’s Hospital for treatment. The first indication that something was askew was his liver infection that was directly caused by the disease. It had allowed a nasty piece of bacteria into his blood stream and directed it to a comfortable lounge room to take residence in what just happened to be his liver. The nursing team at Sydney Children’s Hospital (SCH) were nothing short of amazing, comparing them to our local hospital here in Canberra was like comparing a triage tent in the middle of world war 1 to a futuristic hospital run by robots with a refined bed site manner of a high end aristocrat serving tea. The SCH staff engaged our toddler like a little person, asking him if he was happy for his observations to be taken, and if he shook his head in a gesture of no, then they would accept that and move on til he was ready.
By the second week we were beginning to become a little stir crazy, though we were renewed in faith in that there were individuals that were in situations that were a lot more difficult and depressing than ours. Without sounding morbid, we were in a far superior position in that we had the initial thoughts of a plan been formed in our medical team and it is a strong team at that. Although this was going to be a long road with plans for bone marrow transplant and the like, at least we know that is where we are headed. So after many tests and a rapid education campaign for us, we became entry level graduates to the world of CGD. Then the next pebble hit the pond of our universe causing a progressive ripple through that would result in another upheaval of our world. “Given that you’re expecting another child, you are going to have to find out the gender so we know the percentage chance that it will carry the same genetic disorder”… BAM, the potential for number two having the same disease.. Didn’t see that one coming.
So the tests went on, and in the essence of no-disclosure, we were told the odds and needless to say, regardless of gender, if it was a horse, you wouldn’t be betting your house on the outcome of our unborn been genetic disease free. By the third week, I decided to keep myself entertained and purchased the titanic in sheet metal to build whilst I sat bedside. Any normal person would have taken the opportunity to take a walk during nap time or take up cross stitching… not me, I utilised my time to pushing out the stainless steel metal parts that were no bigger that my finger nail at the best of time and proceed to mold them into the shapes that the instructions told me to.
By week four I had finally completed the titanic model, and at my instructions I asked Jayde to swiftly hit me over the back of the head if I was to ever attempt something as foolish as that in a hospital room with a 20 month old child running about. Levi was beginning to make substantial progress on the recovery path and we had found out that our unborn child was a male and had a one in two chance of having the same disease. As we moved forward with Levi’s recovery, he finally had his central line removed after many a stressful night. This removal was a relief to everyone, including the nurses who had to endure my emotions and often anger at Canberra hospital for using a type of line that had not been used in SCH for around ten years. With the removal of the central line and the NG, Levi was packing on the kilos and using that excess energy to burn around the ward with his plastic shopping trolley. The midnight ward walks were common place as I often made my way to the kitchen to make a Vegemite sandwich for Levi who seemed to be always hungry.
After a steady recover and a decrease in Levi’s white blood count, it was clear that the doctors had managed to get Levi’s liver infection under control. There were no more requirements for blood transfusion and we could see the light at the end of the tunnel. It seemed like we had passes this hurdle. we became a regular sight walking the corridors in the middle of the night as Levi had found that his legs were a better form of transport than having his dad carry him round. To quote a song, his legs were made for walking and that’s what he is gonna do. On the 10th of May we were given the news that we were free to go home, with a crash course on how to use syringes and a swag of medicines, we were free.