During the afternoon of 27 May 2013, an anaesthetist came to ICU to sedate and then manually ventilate me while I was taken to an operating theatre for the first of two procedures: Dr C – an excellent Ear, Nose & Throat (ENT) surgeon – inserted a tracheostomy tube for long-term ventilation; a week later, Dr D – a general surgeon who didn’t bother to visit me post-operatively – inserted a PEG tube for long-term feeding.
Immediately after the tracheostomy I was, quite literally, speechless and my only means of communication were to roll my head from side to side to attract a nurse’s attention and then mouth words at them. Most of the staff couldn’t lip-read so one of my children, who does lip-read, created 3 charts to assist the nurses to understand me. One was a simple A-Z chart, another had body parts and joints drawn on it, and the third listed some words such as pain, cramp, suction, left, right. Selecting letters started in the middle of the A-Z chart and I would mouth “up”, “down”, “left”, “right” and then blink my eyes when we’d reached the correct letter. A similar process was used for the other charts. It was very time-consuming but it was the best solution at the time. On Monday, 3 June I went back into theatre to have a Percutaneous Endoscopic Gastrostomy (PEG) tube inserted through my abdomen into my stomach via which medicines and nutritional fluids could be administered. The orogastric feeding tube was removed and I could finally have my teeth brushed and close my mouth.
Doctors A and B were experienced, professional, kind and encouraging, and did everything in their power to keep me alive and well. A dietician ensured that I received the correct nutrients, and a speech therapist taught me to do various mouth and tongue movements to strengthen facial and throat muscles so that I could chew and swallow again. One of the ICU sisters would later add another exercise, i.e. creating a suction between the side of my tongue and the inside of my teeth to produce an uaudible click/cluck sound. It took a few days to master this, but when I got it right it proved to be the best method of attracting attention
Jeff, the physiotherapist, stretched my limbs and joints twice a day and percussed my chest to keep my airway clear of secretions. In addition to his therapy, I did my facial exercises 4 times a day and had my own set of exercises where I sent messages from my brain to my arms and legs, willing the muscles to work. The first thing I managed to do was move my hips from side to side; the next was rolling my shoulders forwards and backwards. Those small achievements gave me more hope that I wouldn’t be quadriplegic forever.
The nursing staff were – in the main – efficient, cheerful, compassionate, attentive and obliging. One night nurse was truly terrible though (she slept for two hours and wandered off a lot during the other ten hours!) and I asked Dr B to prevent her from being allocated to me again. That nurse was the exception to the norm though.
The ugliness of severe GBS is the total loss of independence and the inability to communicate, resulting in severe frustration at times. Dr B had asked a psychiatrist to prescribe antidepressants in the early stages but some days were unbearably long and monotonous. A psychologist suggested imagery and meditation as coping mechanisms and I relied on these while in ICU and the rehab hospital. I found imagery was more successful as meditation required quietness which was impossible in the busy ward.
After the drips were removed blood still had to be taken once a week to check various electrolyte levels, etc. I felt as if I was a pincushion and dreaded the arrival of the blood technician. When my arm veins eventually went into hiding, veins in the tops of my feet were targeted. Arteries in my wrists and lower arms were the last resort when all else failed. I did have one other drip inserted when my serum albumin level dropped after about 6 weeks in ICU but that was the last drip.
SUPPORT BACTERIA. IT’S THE ONLY CULTURE SOME PEOPLE HAVE – ANONYMOUS
Despite having been moved to a one-bed isolation room within ICU after the tracheostomy I did become very “cultured” in the first 4 weeks, developing drug resistant bacterial infections (bladder, bowel and PEG) that required numerous courses of antibiotics. I also had Shingles during the 2nd and 3rd weeks. An abscess around the PEG tube was the worst – causing fevers and rigors – and ice packs had to be placed on my neck, armpits and groin to bring my temperature down. About a month before being discharged another routine culture showed that a pseudomonas bacterium was resident in my lungs – I was its host but it didn’t cause an infection.
Once stable and bug-free, it was time to wean me off mechanical ventilation. I was afraid, but it was a step forward. The next transition was from CPAP to breathing on my own, with Bi-PAP support at night to prevent sleep apnoea. The amount of oxygen I received was also gradually decreased over time. I had to be able to breathe on my own all day before being considered for transfer to a rehabilitation hospital.
Dr C exchanged the original tracheal tube, after I successfully transitioned to CPAP ventilation, with a cuffed, fenestrated tracheal tube that would allow me to speak again. This was done in ICU, and didn’t require either anaesthesia or sedation. The neck tape was loosened, the ventilator was disconnected and the old tube was yanked out. Seconds later, Dr C pushed the new tube back through the hole my neck, into my trachea, and the ventilator was reconnected. It was painful for only a minute or two. Being a Star Wars fan, my first words were “Luke, I am you father”! (Yes, I know those aren’t the exact words!) I thought it would be hilarious to imitate Darth Vader’s words to Luke Skywalker, but all I got were blank stares – the staff were too young to know what I was talking about!
Speaking again was wonderful, but the fenestrated tube brought its own problems. The tube irritated my trachea causing excessive secretions, and when the cuff was deflated so that I could speak sinus secretions ran down the back of my throat. Some days were very bad, limiting my speech time to as little as 5 minutes but there were days when I could speak for 2, and sometimes 3, hours. The tracheal tube stayed in for 8 months as the criteria for removal were that I had to breathe on my own, cough properly, and lift my arms up sideways.
Shortly after being isolated, my family brought a large wall clock and balanced it on the frame above the sliding door. I had lost my sense of time in ICU and 10 minutes felt like an hour, a day seemed endless, and my only time markers had been the food trolley and the obligatory 3am bedbath! As silly as it sounds, having a clock also made me feel calmer and “in control”.
For entertainment I watched a LOT of TV and listened to the radio as well as books on CD. Visiting times were great as my friends and family were always cheerful, read articles and stories to me, and brought news that took my mind away from my illness. During the 4 weeks leading up to being discharged from ICU, I was taken outside 3 times. The nurses connected me to a portable monitor and small oxygen cylinder, that were placed on the bed, and pushed me outside the entrance to the hospital. It was wonderful to see a wider horizon, feel the sun on my face and through the bedding, smell fresh air and hear birds chirping. We stayed out for between 30 and 40 minutes each time. Most people paasing by smiled at me or stopped to wish me well, and one little girl waved to me. I felt human again.
The longer I lay in hospital the more I understood the saying “be a human-being instead of a human-doing”. Some things we feel compelled to do on a daily basis aren’t always necessary. Without deadlines to meet, I could focus on what really mattered. Whenever I started feeling sorry for myself, though, I made a mental list of 5 things to be grateful for. I often thought about people who didn’t have support, and those in underdeveloped countries who didn’t have access to advanced medical care and who would die if they developed GBS. I vowed never to take anything for granted again, and promised the doctors and nurses that I’d be available to speak to GBS recoverees when I was well again.
The 24-bed ICU was busy and there were many very ill people, some of whom died. I battled to come to terms with having cheated death. Was I only alive because of the developments in medical science? Should my natural life span have ended on the day I stopped breathing? Was I supposed to learn from the illness and do something with that knowledge? I don’t know the answers and probably never will, but I do know that only I can give meaning to my own life and be “the master of my fate, …the captain of my soul”. It’s all up to me to get back on my feet again.
© louisehasgbs 2014. All rights reserved.
Disclaimer: This is a personal account of my experiences. Discuss all treatment, medication, diet and supplements with your own doctor and/or specialist.