Little Silver Tube

Post Traumatic Stress Disorder. For so long I never really knew how I 'coped' with not having any kind of counselling through my life, considering I have had quite a lot go on. This is why I started my blog, as I said at the beginning. It was to try and 'self council' myself. But more recently nothing I have done for myself has really worked. During the Coronavirus Pandemic, I had alot of time to think, I wrote two blogs in that time. Two of the most traumatic ones, my face surgery and when I had Sepsis.  Now, if you read my sepsis blog, you would know that the cellulitis started from a vaccination. So, now in 2021 Boris is talking about the corona vaccine. I have been talking about it with my friends and family completely aware that I will need it as I am vulnerable and have been shielding for what seems like forever...! But it came to my realization that whenever it was mentioned I got agitated, and then my symptoms started to get worse. Any mention of the vaccine and...

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...

Where do I start.. It was said at times that I may not even be able to have children due to my body and breathing. There wasn't any real information or support groups for people with PRS and with trachys that have had children. Christmas Eve 2014, was the day I found out I was pregnant. I called Prince as he was at work - we were both shocked as we were not trying to get pregnant. All kinds of emotions were going round, am I ready? But clearly my body was.  I had a really easy pregnancy with her, a ridiculous amount of sickness for 17 weeks then it was bliss! I loved being pregnant, I loved my bump and feeling her move around.  I had to have regular checks on myself and the baby. They did intense scans to see if they could identify any abnormalities with her chin and palate to see if she had PRS.  From 30 weeks I saw the consultant every Friday for scans and checkups.  At 37+3 weeks 03-08-2015 @ 10:40 I had an elective cesarean section. They did not want m...

This is something I don't tend to share with people. I will most probably re-write this post many times before I actually publish it.  I just wanted to share how having multiple issues with my health has affected my mental health and how I look at myself.  I often say 'I hate myself' and that's not because of what has happened, it is because of the way I look at myself. I wish I was able to look at myself and think wow I've been through alot and I'm still here, with my daughter amazing family and friends.  But sometimes I cant.  I am so self conscious.I question everything I do. I take pictures, and post them on Social Media, I guess searching for acceptance from other people as I haven't quite got there myself yet. I seem to have such an issue when it comes to meeting new people and telling them about my trachy and all the things that have happened to me because, I worry that they will lose interest or will judge me for it. For some reason I see it as...

My first years were quite difficult, not for me of course as I don't remember them,  but mainly for my parents, brothers and extended family. I have asked them all to write something, so there will be a link to read there stories soon. Along with my Pierre Robin Syndrome, I was born with dodgy hips - aka hip dysplasia. So I ended up in traction for a while then my hips were put into place and wrapped in a plaster cast for 9 months. Since then I have had problems with my hips but luckily have not needed any operations on them. I had alot of operations on my trachea and cleft palate. I had a full cleft palate when I was born, which is where the roof of my mouth just wasn't there. So they had to create one for me. Having no palate was the reason that I was fed through an NG tube for a while.  Having 3 older brothers made my life so busy, when I wasn't in hospital I was watching them play football and cricket. Every. Single. Weekend.  This was a good distraction f...

I'm going to make this a brief one.  Basically a tracheostomy, is a tube that is inserted into the trachea to provide an airway for someone that is compromised some way or another.  My one is there because my upper airway is so small there is not enough space for me to breathe normally. So having the tracheostomy there enables me to breathe.  Here is a diagram of the different tubes and how they sit in the airway. My one is most similar to (b). I have a fenstrated tube to enable air to go over my vocal chords so I have a voice. ( I literally talk for england!) This is what my tube is, Silver Negus. Made from pure silver. Looks alot nicer than some of the others and reduces risks of infections.

Now, not many people really know of Pierre Robin Syndrome, as it is pretty rare. 1 in 8,000 - 30,000 people worldwide are affected.  It comes in different severities, mild, moderate and severe. I have a severe case.  Below is taken from CLAPA (Cleft Lip and Palate Association) so you can gain a brief understanding. The Features of Pierre Robin Syndrome - Also known as Sequence are: Small Lower Jaw A baby with PRS will have a jaw which is noticeably smaller and more receded than those of other babies. This is called ‘mandibular hypoplasia’ or ‘micrognathia’. The smaller jaw is thought to be the cause of the other features of PRS, but because the jawbone continues to grow as children get older, it usually doesn’t need to be treated surgically. Breathing difficulties The smaller lower jaw means the baby’s tongue will be further back than usual. This means it is more likely to ball up and fall backwards into the throat, causing obstruction and therefore breathing dif...