Easter Monday 2019 was the moment our lives were about to change, and we had no idea what we were in for. To this day, the days all rolled into each other: the blur of beeping, signing consent papers, doctors talking, repeating our story a million times, being moved into an ICU room, people visiting, trying to recall what we had done the last few days to work out if anything could be the cause, the lack of sleep, the microsleeps, the tears 😢 It’s something as a parent you never want to go through and would never ever wish it upon anyone. But once you become a 'hospital parent', for me I feel your perspective changes on a lot of things. Genevieve has spent a lot of time at The Royal Children’s Hospital with a lot of different teams looking after her. These teams have all been amazing both during her admissions and before and after. Genevieve has dealt with Gastroenterology, Genetics, Metabolic, Immunology, Allergy, Dietician, Ophthalmology. She has had surgery on her liver, as well as a Port put in. Been put through ultrasounds and x-rays, countless blood tests. Genevieve spent her 1st Birthday in ICU at the RCH. After falling ill and being in Acute Liver Failure. Since then, she has had multiple other admissions both in the ICU and on the Cockatoo Ward. With the help of the specialist teams, doctors and nurses at RCH, Genevieve is still here with us today, happy, and healthy most of the time. We are in regular contact with these teams and will continue to be in contact with them for years to come. Genevieve has a rare condition, where she can go into acute liver failure if she gets a fever. She has a gene mutation called NBAS, which sets this off, however we do not know the tipping point of when the acute liver failure begins or how many times it can occur before it stops recovering. There has been talk of a liver transplant, however we are not there yet luckily, as this can open a whole lot of other medical conditions. There is no cure, only preventative maintenance, we are forever watching, checking temperatures, and making sure she is happy to help prevent episodes. Genevieve is now a happy cheeky 5-year-old, who attends 4 year old Kinder and is prepping to get ready to start primary school in 2024. Her life involves: regular hospital visits, port flushes, follow up appointments with different medical teams. Genevieve has grown up a lot quicker than most kids her age, she is not afraid to show you her scars, talk about her port, or show you photos from her hospital visits. She is very resilient and takes each day the best she can, she does not stand down from a challenge. I know there are people out there a lot worse off than Genevieve, who have spent a lot longer in hospital then she has. But this can only be done because of how wonderful, and what amazing jobs the doctors, nurses, and behind the scenes staff can do, not only for your child, but supporting the parents along the way as well.
