Sleeping beauty, or not!

After being re-ventilated on the Saturday morning 28th February, the doctors had a meeting with my parents explaining the seriousness of my situation and even suggested to them to call my brother who was working on a ski season in Austria and tell him to get the first flight to newcastle because of the high chance I wasn't going to survive. They were told my lungs were completely infected with pseudomonas along with a secondary infection of pneumonia and on top of that I had septicaemia. My X-ray showed my lungs were a total white out, my feet and hands were purple and frozen to the touch, my mum said I was like a corpse. Along with my struggling lungs my heart was at full stretch, I had now had a dangerously hight heart rate of over 170bpm for over 24hours. My mum, dad and sister took it in turns to be by my bedside constantly, holding my hand and talking to me, willing me to get better.

Fully sedated.

Mum holding my hand and talking to me while I'm sedated.

By Sunday morning 1st March, things had took a turn for the worst, my heart rate was still extremely high and there was no improvement in my lungs, worst still they had almost lost me in the night and only just managed to save me. Things were not looking good and the doctors were in discussion about the best thing to do to try and get me better. The group of over 20 people in the transplant team were in 2 minds, some thought I should be put on an ECMO machine which would take over my heart and lungs whilst other thought I should be put in the 'prone' position first and see if that yielded any improvement.

The diagram above shows how ECMO works, 1 tube is inserted into the inferior vena cava vein in the groin and threaded up into the heart, a second tube is inserted into the superior vena cava vein and also threaded into the heart. The blood is pumped out in the inferior vena cava where an oxygen sensor senses the o2 saturation and if it is low it is topped up with oxygen when pumped into the lung membrane, the blood is then warmed as it continues along the circuit back into the body via the superior vena cava.  

The figure above shows the prone position, the advantages of this position are it lowers pressure on the lungs as the heart is not pushing down on them, in turn the lungs are able to expand more, taking in more air and improving oxygenation.

My Professor in charge had the final say and decided to turn me prone as he didn't think I would survive the invasive procedure to attach me to an ECMO machine and even if I did he doubted I'd improve or ever wake up again. So the afternoon was spent turning me prone, involving a huge team of nurses and doctors. My eyes were taped shut, my head was placed on a gel cushion to prevent sores on my cheek, I was given stronger sedation and a paralysis drug so that I couldn't move nor wake and become distressed during the period I was prone.

My brother arrived at the hospital on Sunday evening, the nurses had to talk to him before he was allowed in to see me so that he wasn't completely shocked by what he saw as obviously the state I was in was very scary and not nice to see.

After my brother left I had another sudden turn for the worst and I was on the edge of life once more, again they managed to save me but it just shows how much stress my little body was under. On Monday morning 2nd March I had re-stabalised and my doctors had another meeting with my parents to discuss the possible outcomes of my current situation. There was a chance that when I regained consciousness my lungs wouldn't be able to cope without the ventilator and would be as irreversibly damaged as my old ones were. They said the next 5 days were crucial in seeing how I got on.

By Monday evening I was turned back around the right way out of the prone. You can only be safely in the prone position for up to 2 days due to the high levels of sedation required in the prone period. As the sedation was lowered, although still enough to sedate a horse according to the nurses, I started to become more aware of my surroundings and was in what is classed as a 'twilight zone' in which I could hear everything that was going on around me but wasn't bothered by it. However, just being able to listen wasn't enough for me I wanted to communicate and so I fought the sedation all that I could! I began to gesture in my own made up form of sign language as well as being able to answer questions by squeezing my hand in theirs or wiggling my feet for 'yes' or not reacting for 'no'! I wasn't content with this though and so they gave me an alphabet card in which I could point to the letters to spell out words, great idea but slightly useless to me as the one part of sedation I couldn't fight was having my eyes closed, just opening them a fraction was almost impossible for me so the alphabet card was scrapped!

Not interested in the alphabet card!

Over the next few days I remained stable and believe it or not whilst in my twilight zone I finally had my hair washed after a month with the help from an 'elephant ear', 1 nurse, my sister and my mum! I have a few sketchy memories of this happening! My head was placed in the 'elephants ear' which acted as a basic and they did the full works, washed, conditioned, combed for about 2hours and finally blowdried and re-plaited my hair! Who knew you could have the full salon treatment in ITU!

Washing my hair!

Trying to comb it through!

Hair wonderfully re-plaited!

As the sedatives were weaned even more I began to get horrible withdrawal symptoms, the sedatives were a kind of opiate and so as I withdrew from them I has convulsions and shakes from anxiety attacks in which the nurse would have to call my mum as she was the only person that could calm me down. I had strange and horrible dreams, my mind was in a very bizarre and strange place that I would liken to a labyrinth. I would be very confused in my wakeful periods in which I could now open my eyes, on one occasion I woke up asking 'whose birthday are we celebrating' and was puzzled when they told me it wasn't anybodies birthday! I also started to write things down on a clipboard, I struggled to keep my eyes open to write and my hands were uncontrollably shaky but I still managed the odd legible word or so. I would wake up thinking people had visited or rang me but they had just been hallucinations, below is the a piece of paper I wrote Gerard, my dads cousin, had rang me at 5am, I was convinced he had yet when dad checked with the nurse there of course had been no phone call!

My favourite thing that I wrote was asking for was a selfie with my brother! Every time I saw him I thought it was the first time he was visiting me so would greet him with shocked eyes and a huge smile, sometimes I even tried to pull my ventilator out to try and speak to him! I asked for the selfie as proof he was there as I didn't know if it was another hallucination!

SELFIEE!

Selfie I asked for with my brother! I tried so hard to smile with the ventilator on and I couldn't keep my eyes open either!

On March 6th I started to lose some tubes; I finally had my last 2 chest drains removed, what a relief! They also began to wean how much support I was receiving from the ventilator! By the night I was breathing alone via the ventilator with no support and my blood gases were remaining at a good level! The ventilator was finally removed on the 7th and I was transferred onto high flow oxygen, such a positive step to recovery!

I had my first really good day on the 8th of march, my dialysis was disconnected so another line down! My high flow oxygen that is delivered via a mask was changed to a more comfortable nasal cannula. When the physio visited me that day she decided it was the perfect opportunity for me to try and sit in my chair, so with hers and the nurses help I managed to stand from my bed and sit into my chair, a big move after 2 weeks laid in bed! I managed to sit in my chair for a few hours and enjoyed my first cup of tea since coming off the ventilator!

First time sitting in my chair!

Over the next few days I continued to sit out in my chair for hours at a time, it was so important to sit and have that change of position from the bed, sitting upright helped my lungs expands and move any secretions (mucus) I had in my lungs still from the infection! I began to start eating solid food again instead of just relying on the NG feeding tube. Because I was now stable and awake I was no longer allowed visitors all the time, I had to have the strict ITU visiting hours of 2-10pm. That may sound generous but when you are awake from 6am onwards that 8hours until 2pm is a lifetime, I would stare at the clock willing it to go faster so I could have my parents back by my side! I tried to distract myself with day time tv, I had a very well organised routine, I knew what programme and channel at what time! I hated hospital food so would have toast with my own honey mum had bought for me and a cup of tea! At 2pm on the dot mum and dad would arrive with my lunch! We would spend visiting hours talking about my progress and things I was looking forward to doing when better. My parents would read books to me or the well wishing texts they'd received, we'd watch films or any good TV programmes! One day would blur into the next as we just waited for my body to get stronger and recover!

I had a bronchoscopy scheduled for the 12th March as I was now almost 4 weeks post transplant and that is the time of your first biopsy! My mum was allowed to arrive at 8.30am that morning to wave me off to the surgery but an emergency case came in and so my bronchoscopy was delayed until 4pm! I was nil by mouth and absolutely parched and starving, it was such a relief when they finally took me down! I was only given a throat numbing spray for the procedure, no general anaesthetic so it was quite scary being in the big operating theatre like the one my transplant would have taken place in, wide awake! It was all okay though, they put the tube down my throat into my lung which made me splutter slightly and obviously it wasn't the most comfortable thing but it was over in 20 minutes and whizzed back to ITU where I soothed my throat with an ice lolly and enjoyed dinner with my parents! 

The 13th was the day I began to feel human again when I put on my own pyjamas and dressing gown for the first time instead of wearing the hospital gown! It was so much cosier! The physios turned things up as gear too, quite literally in fact! They bought in a pedalling device in which I could sit in my chair and pedal with my hands or feet! I managed a whopping 6 minutes which is pretty incredible after 2weeks of being completely bed bound and having lost all muscle tone!

Happy in my own 'clothes' and pedalling away!

I was deemed infection free on the 14th and well enough to move from the cubicle I'd been confined to out into a bay or as me and the nurses called it 'our den'! I also had my hair washed again and totally relaxed and enjoyed the whole experience of warm water flowing over my head! It made me crave a shower instead of the bed baths I'd become accustomed to!

My lions mane of hair before washing! 

The elephants ear ready for washing!

On the 15th I awoke to the news from my doctor that I could leave ITU and return to the ward that, just in time to celebrate mothers day! I was overjoyed and by noon I was settled in room 15 on ward 38! My brother and sister were first to arrive to visit me, no more restricted visiting times on the ward, wahoo! They had bought me a pack of liberty print cards from which I chose one to write to mum for mothers day which I succeeded in doing despite my shaky hands! They'd also bought some chocolate which we wrapped too! 

First family photo with me with new lungs!

Laden with shopping bags mum and dad arrived after their pyjama shopping spree for me! We gave mum her cards and gifts which made her so happy, we were back together as a family with me doing well, we even had our first family photo! The day was finished off with a McDonalds that I'd been dreaming of for days a chicken nugget happy meal and a McChicken sandwich! I was in heaven surrounded by my loved ones and back on the ward on the road to recovery! 

Tucking into my burger! 

Holly

x