This is the story of my son Max. On the 2nd of June, 2011 Max had a stroke and was admitted to the ICU at the Royal Childrens Hospital. On that day he was also diagnosed with Idiopathic Thrombocytopenic Purpura (ITP). At the time he was only 10 weeks old.
Thursday, 23 June 2011
Thursday 9th of June- Moving to the ward
The day we moved out of ICU I was grumpy. Grumpy at the nurses, grumpy at the doctors and grumpy at the world. It should've been exciting moving up to the wards but it wasn't. It was terrifying! In ICU Max had a nurse all to himself, there were lots of monitors and machines that went 'beep'. All of this was very reassuring and I always felt secure knowing that if something wasn't right then it would be noticed and rectified straight away. Max was still requiring platelet transfusions multiple times a day and we were now having genetic testing to rule out rare genetic disorders. Max was at risk of further bleeding everytime his platelets dropped below 10 and this happened several times a day. Max was also really grumpy and every time he cried the nurses tried to involve me and would ask "what do u think is wrong with him Mum?". I almost cried every time they asked because I just didn't know. A week ago I would've had some idea but now? It wasnt a simple matter of hungry/tired/dirty nappy anymore. He was withdrawing from a cocktail of narcotics and he had a serious brain injury. Where a cuddle from Mum would've always cheered him up in the past, it didn't now. Later that afternoon we moved up to the high dependency unit in the Neuro Ward. We had a 4 bed room and when we first arrived we were opposite a 4 year old boy who was hooked up to a fancy brain monitor. He was profoundly disabled and had a seizure not long after we arrived. I tried not to stare at him but all I could imagine was that being Max in a few years time. all that Max could do was stare vacantly to the left. I'd stand on his left side and pretend that he was staring at me even though I knew he wasn't. On that particular day I felt so broken.