Help Lulu’s Wish Come True

Hi guys, Chloe here. As I’ve mentioned to many of you who know mum, or know me, she has spent most of the past two and a half years in hospital or bedridden. For the past four or so years her health has deteriorated after her car accident in 2010 and there are many reasons why. Unfortunately for mum she has severe Neurocardiogenic Syncope which means her blood pressure is very low. She is on maximum doses of all medication for that and had a pacemaker put in in 2012 to assist with it. Despite that, she still not only has syncopal episodes but in the past two years has had 3 cardiac/respiratory arrests needing cpr and helicopter transportation to a city hospital ICU, intubated and sedated to help her breathe for two of them, the other she was already in hospital for and taken directly to icu and intubated and sedated. Her body has built up an immunity against so many medications that she now has an allergy list of almost 20 medications including simple saline on the skin to narcotics and antibiotics causing anaphylaxis. After having a peg tube inserted nearly 5yrs ago to assist with nutrition intake and lower the rate of syncopal episodes the rest of the gut started to fail with nerve damage (which has completely damaged her left side rendering it now useless and contracted only her fingers able to open slightly thanks to Botox) and partially her left foot which is contracted also so she is unable to stand anymore. She then had a colostomy and urostomy put in to avoid having to live with the discomfort and embarrassment of adult nappies for the rest of her life but this too comes with its own complications as surgery on the bowel can cause weakness and necrotic areas to surgically damaged parts of the bowel that cause severe cramping and pain on a daily basis. Apart from the ongoing risk of arrests, the significant changes that have occurred over the years are that she has developed severe metabolic acidosis (CKD Chronic Kidney Disease) meaning her kidneys do not release the acid that it should but it lets go of all of the nutrition it should retain such as sodium bicarbonate and at times potassium. These can lead to cardiovascular issues alone, coma and death if the levels drop too low. It has already caused delayed function to one side of her heart. For mum, they drop weekly and she is needing weekly infusions. Unfortunately during her last hospitalisation she developed a staph infection, her second one now and lost her infusaport, her only access to get the bicarb making it near impossible to have infusions. I flew over to visit mum and we went to see the Nephrologist who has said to her “we need to get something put back in ASAP, not having access (due to poor veins) and I need to ask you if you will be ok to travel weekly to the city for infusions to the major hospital infusion centre in a big hospital with all of the facilities just in case something goes wrong because we are looking at possible end of life situation here if we do not do something and we need you in a safer more hygienic and experienced environment. The staff need to have the knowledge to care for you. He was so caring and concerned for my mum and even asked if the family could afford this weekly trip (a whole day each week) and mum was in tears saying what choice do I have, I want to live, I want to do so much please just help me. It broke my heart. She’s fighting so hard to be here. She tells me every day she just wants to watch us all grow up and have families and she knows the reality of that is very, very difficult for them with limited knowledge of such a rare condition combined with what she has going on as a whole. We went for a coffee after her appointment and it broke my heart to hear her tell me her wishes should anything happen to her. Her concerns of course for Teigan and her health, all of us kids and Mark. Despite all of this. Mum is happy. She loves her animals and spends her every waking moment with them. Teaching Nomi ( @saintnomiandme ) to be her new service dog and her menagerie that just lay with her or she occasionally gets to visit outside. She’d save the world if she could. But there’s one animal she’s never had the chance to have an encounter with and it’s her favourite, she has three tattooed on her back, signifying her two older brothers walking either side of her with the words “don’t worry, bout a thing, cause every little thing is gonna be alright” (Bob Marley)That’s mum. That’s her attitude. Just keep swimming. ~ Dory I would love for mum to live her dream of having her elephant encounter. As you know I hid this idea from her and wasn’t going to tell her but a very good friend said Let her look forward to it. Give her hope, purpose, something to look forward to. She’s quite overwhelmed to be honest. But she has no idea of the love that abounds her. I don’t know but she has so much she wants in life. As we all do. Nothing is ever guaranteed, she knows that. She’s lost two brothers. Her fears are her parents losing another child and her children losing a mother, Mark losing another wife. Life isn’t fair so she will fight the longest fight she can. It’s not the life she’d wish for anyone. It’s not the life she’d choose but she’s alive and forever grateful for just being alive to be here with her loved ones to watch us enjoy life. That’s all she wants. I’m putting this together in hope that I can help make mums dream come true. She is too sick to do anything alone and will need a qualified nurse with her no matter what she does. But we hope we can make it happen. We took her out for a few hours the other day and that was a lot for her but she’d only been home a day from hospital. Let’s hope we can do this. Mum is also open to hearing from anyone who knows anything or anyone who specialises in metabolic acidosis to try and improve her quality of life and time between hospital infusions. There is no cure but she believes in miracles.