Little Silver Tube

I thought I should introduce myself.  My name is Alii, and I have a little girl called Penelope (she's the cutest). I am 30 years old, I have a tracheostomy (the little silver thing in my neck that helps me breathe) due to having a condition called Pierre Robin Syndrome. Throughout my life, I have had many different medical complications, 66 operations and a few near death experiences.  I thought creating a blog would be a good way, to share my experiences and also understand myself a lot more...  x

In 2001 I met Professor Haers. He is a Maxillo Facial Professor. He operated on my left jaw joint (TMJ) at the time as it had some problems within the joint and I couldn't open my mouth properly. He has done quite a few of my surgeries but my Jaw Distraction is the biggest. Fast forward 6 years, and he was the man that changed my life. I was extremely self conscious of my side profile and the way I looked with my lower jaw being so far back - I could fit my index finger in-between my lower teeth and upper teeth when they were clenched together. I vividly remember a day before school, looking at the back of my hair and catching a glimpse at my side profile and crying. I genuinely hated it.    He came to me and said there was an operation that he could do, that would move my lower jaw forward and also my upper jaw too, to improve my side profile but also the hopes of strengthening my airway to potentially remove my trachy.  This was a very daunting time. I remember my m...

I’m going to start right at the beginning...  My Mum (Jules) and Dad (Barry) had 3 healthy boys, Phillip, Adam and Neil. My mum really wanted a little girl, so they tried lots of different ‘old wives tales’ to try and have a baby girl.  In July 1990, my mum found out she was pregnant with me. Due to being a pickle in the womb, they were never really able to tell my sex, or see any abnormalities.  On April 29th 1991, I was born. My mum had a very difficult birth with me, as I came out bum first with my legs up to my head and my arms wrapped around them, medically known as posterior flexed breech position. I had slight difficulties breathing when I was first born, but the main thing that was noticed is that my lower jaw was set back quite far. This was when I was diagnosed with Pierre Robin Syndrome. (You can find out more about this in another post). As my lower jaw did not form properly, my upper airway was unable to grow. Which meant th...

In November 2018, I had my latest medical emergency. I was taken into intensive care for 6 days, with Sepsis.  Monday 19th   It started on a Monday morning, I had been unwell for a while with the standard chest infections, but I was advised to have 2 immunisation jabs, Pneumonia and Meningitis.  I remember it all so clearly, waking up that morning feeling a little better than I had for months previously, had my jab at 8:55 then went and spent the day with my mum. By 14:00 that day, my armpit starting to ache and I didn't feel very well at all.  I picked Penelope up from Pre-School, took her home and we had a chilled afternoon. I took myself to bed at 20:00 from feeling so unwell.  Tuesday 20th I woke during the early hours of the morning, vomiting, dizziness and severe pain in my left arm. The pain was so bad I couldn't even have a blanket on my arm, I couldn't lift it or move it.  First thing in the morning I called the Dr's surgery whe...

What is Sepsis? Sepsis is the body’s overwhelming and life-threatening response to infection that can lead to tissue damage, organ failure, and death. In other words, it’s your body’s overactive and toxic response to an infection. Your immune system usually works to fight any germs (bacteria, viruses, fungi, or parasites) to prevent infection. If an infection does occur, your immune system will try to fight it, although you may need help with medication such as antibiotics, antivirals, antifungals, and antiparasitics. However, for reasons researchers don’t understand, sometimes the immune system stops fighting the “invaders,” and begins to turn on itself. This is the start of sepsis. Patients are diagnosed with sepsis when they develop a set of signs and symptoms related to sepsis. Sepsis is not diagnosed based on an infection itself. If you have more than one of the symptoms of sepsis, especially if there are signs of an infection or you fall into one of the higher risk groups, ...

Coming to realise you're not 'normal' is tough. Not always being able to join in with your friends and be able to do everything you want to be able to do and should be able to do. Growing up my mum and family kept me in a little bubble, so to speak. They made me feel like my life was 'normal'. No matter how hard they tried, it was still tough going through secondary school with lots of friends (wonderfully understanding of my condition) and not being able to socialise after school and join in with the jokes after a weekend. I did feel left out, but I just had to deal with it. It wasn't safe for me to go out and about as none of my friends would have been able to help me during an emergency. As I got older and could do my tracheostomy care easily without anyone else around, and understanding when I need help, I was able to go out and socialise without a carer and my mum. A sense of independence. Something amazing, yet very strange. It was great.  When I met ...

I am always one to support the NHS and it's staff due to everything it has given me. Without it, I would not be here today. So I will forever be indebted to it.  However, I have come across some interesting people in my time. The reason I am writing this now, is because still today I have struggles with some professionals. Anyone with an long term illness, or who has a child with a long term condition will understand exactly what I mean. The feeling you get, when you think the Dr's think you're making up how you feel and are dismissive of your feelings and thoughts.  I often come across people who do not understand my condition, nor my tracheostomy and its needs.  The very first time that I realised people didn't understand and weren't willing to understand was i n 2010. I was accepted into University to do Paediatric Nursing. Something that has always been close to my heart, ever since I was a little girl I wanted to be a nurse. I was accepted into Uni due to...