LIFE ON THE WARD

paediatrics

When it comes to life on the ward I may as well start at the beginning. It wasn’t pleasant early on, but things got a lot better as time went on. When I was born it wasn’t long before I had my first CF related issue. I had an Intussusception (basically the bowel folded in on itself like a telescope). I needed an ileostomy to fix it. Oh, and I also died for about 3 minutes.

I’ve always joked that after all the things I’ve been through and survived, when I died, I met God… and after 3 minutes I irritated him/her/them/it enough that they sent me back down so they could have a break from me for a bit. From the looks of it, they’re still not over the headache I probably caused sot you’re all stuck with me instead. Hahaha.

My diagnosis was actually pretty quick, but it was actually first suggested by a student doctor. I was in recovery and a student questioned if I had CF as common for us to have an intussusception at birth. He was correct and I was officially diagnosed at 3 days old. I was in hospital for the first 3 months of my life and in that time, I had contracted MRSA in the lungs. Hence why the doctors said I wouldn’t see 16. I’m grateful I don’t have many bad experiences I can remember on the ward, but I will mention some of them.      

One bad one that comes to mind was when I was alone in my room, probably around 9-10, when the ward nurse came to remove the needle from my port. I was already trained in that, but you need three hands to remove it.

II could see she was about to make a mistake by injecting the full amount of hemlock3 before removing the needle. I questioned her and got a snotty response along the lines of “you’re a kid and I’m a nurse I know what I’m doing!” The thing is you’re meant to remove the needle as someone is still pressing the syringe as it creates positive pressure in the port and stops it blocking and bleeding once the needle is out. So, as predicted she pulled the needle and blood squirted out like a water pistol. I was terrified. I had issues with my port before and being a kid, I was scared I was gunna bleed out or something (it’s not that threatening but still can look horrific). My mum arrived shortly after. I was still in tears holding a blood-soaked bandage against my port. My CF nurse Julie arrived with my paediatric surgeon calmed me and my mum down. She explained it’s perfectly safe and all they have to do is put in a new needle and remove it properly. My surgeon just stood there and kept quiet. Eventually she excused herself and left. A few seconds later we heard the biggest bollocking I’ve ever heard. She had found the nurse responsible and properly laid into her. She as livid and was ready to get the nurse sacked on the spot. After she had finished, she came back in and sat me down. She told me that no matter what I was to never let someone do something I knew was wrong or let someone talk over me. She said even at 11 I am an expert of my own health and if I felt uncomfortable, I can always ask for someone else if I wanted it. She was wonderful.          

Now getting a bit older I remember getting lonely every so often but mostly they’re actually really happy memories. By the time I was 5 my parents had Alex and Mitchell to look after too but my mum would still spend the nights on the pull-out guest bed whenever I was admitted. We had TVs with a phone attached but my parents would usually get me things to do rather than having to watch Tv all day. Plus, it was like £2 a day for Tv or something like that and I wasn’t really interested in it anyway. A few things that really stick out was a huge Lego boat my dad got me to do but it was missing some pieces, so I just used the bricks. I was usually given a Lego set and I quickly became able to follow even the more advanced sets. My grandad Malcolm would always buy me a Simpsons comic. I never really liked the Simpsons, but I did enjoy them comics. Finally, one of my favourite gifts was when I was about 12 and I loved a show called MEDABOTS. It was an anime, like Pokémon, where kids got a small robot that they would compete in little battles. It wasn’t the most popular show so after a year a lot of their toys and merch was sold in a store called Home Bargains for dead cheap. I remember being given two little kits that included a little exoskeleton and parts that you attached to build a scale model of the robots on the show. I loved the detail and the crafting element, and at the end I had a little posable robot toy. I’ve even bought the same toys off eBay a few years ago and I treasure them.  

One other memory that sticks in my head was when I was around fourteen. Over the years my mum and I noticed that the radiators on the ward was in dire need of cleaning. They had a large guard over them, and from what we found out they was the subject of a huge dispute on the ward. Basically, the nurses would blame the cleaners for not cleaning them and the cleaners would complain the nurses wouldn’t provide the keys to remove the guards so they could actually get to them. In the meantime, they were just gathering what must have been years of dust. One day, close to my discharge date, my mum brought me some air-drying paper clay. We decided to make little germs. I made a little chicken that was bird flu, we made a MRSA bug and a load more. We hid some around the room to sorta make a point to the cleaners to make sure they were actually cleaning properly. I remember being discharged and taking a few with me for some reason we found it hilarious to ask passersby if they wanted bird flu.

The only other strong memory was my transition to independence. I don’t remember loneliness being an overarching feeling, but I used to hate it when I had long periods on my own. I was room bound, and I would need a commode. My room didn’t have toilet facilities and I would have to clean myself with wipes. Usually, my mum would just go and ask but when she left, I would have to use the buzzer. I remember them regularly taking ages for the nurses to respond. So, I found myself learning to live in my own company. I think it’s that that has given me the curious mind of the bigger questions of myself and then to bigger questions of the universe. It was my love of philosophy blossomed and also my complete annoyance at small talk. I’d rather know what superpower you would want over what you do for a living… unless your job is really cool.

My school life wasn’t affected all too much. Although in year three I was in hospital for about 2 months, and I totally missed learning to tell time at school. While it didn’t affect my social life as I got older, I was a little upset about how so few of my friends had come to visit me and when you’re an angsty teen it’s hard not to take it personally. I did have a friend visit twice. My friend Tanya was the first one to visit and she gave me a 2-foot marshmallow stick from Hull fair. My second visit was from my friend Jade. She came to say hi and to bring me some books to read while I was in. It meant a lot that they came but looking back I was really ill a lot of the time so it may have been an unpleasant experience for my friends to see me like that. Even though I felt fine in myself. In college I had a couple of friends that would visit me often. My friend Alice started seeing a guy and he randomly popped by to give me some snacks “because hospital food is gross”. He already had my seal of approval but that showed what a great guy he was.

Adult 

At 16 I transitioned to adult services I moved to their respiratory ward for my hospital admission. It didn’t take long to settle; we had our own rooms with ensuites and a free tv. On top of that we are also provided a large fridge to store our meds and snacks. If it weren’t for all the alarms, sick people and regular staff coming in for various reasons it would make a decent hotel room. I can’t speak more highly of the nurses and staff that, after 13 years have become dear friends. Much like 5- feet apart I know everyone on a first name basis, how their kids and partners are doing etc. They also know my needs and habits.  For example, they know I don’t usually eat on the ward so they get my slip for canteen ready and let me sleep in when I can.  

Physio changed too to my dismay. I was in a hospital with 13 floors, or 26 flights of stairs. Now I will brag a little and say at my fittest I would race the physio up to the top from floor 5, down the ground floor then back up to the 5th floor. Nowadays I’m happy just walking up to the top and back haha. I do still get a laugh when I get a new physio that doesn’t know I’m wayyy fitter than I look and hold their arms out to support me on my way up. Or ask me to slow down and don’t “push myself”.

I’ve also had more visitors. My friends Tyler and Vikki come by when they can too. My family visit a lot too. And again, some of my favourite memories are when my late Nana would come to visit me and off load the chocolate people have given her or she somehow acquired. She knew I didn’t really eat chocolate, neither did she,  but her excuse was its better for me than it was her. I loved hearing her stories when she would visit.    

As I said the nurses, particularly Sophie have become more like family after spending a few consecutive winters on the ward and was in hospital over Christmas a few times too. Poor Sophie would be left to decorate the ward and it became a little tradition we would decorate the ward together. My life on the ward, while loud unrestful and inconvenient, has been very positive. All thanks to the amazing staff and the wonderful family and friends I’m incredibly lucky to have.