Rehabilitation – 146 days

IF YOU ARE GOING THROUGH HELL, DON’T STOP.

– WINSTON CHURCHILL

 

Three paramedics arrived after midday on 9 September to transport me to the rehabilitation clinic where there would be new doctors, therapists and nurses.  The ICU nurses waved goodbye and sang “for she’s a jolly good fellow” as the stretcher was wheeled out the door. It felt great to be moving on to the next stage of recovery.

Once at the clinic the nursing staff transferred me to a bed in a single room opposite the sisters’ station – and I was back in isolation.  Drat!  It was just a precautionary measure, though, and the mask/gloves/gown routine for all staff and visitors would end a week later.

I had parted with the air mattress when I left ICU and had to now lie on a standard hospital foam mattress which was uncomfortable and didn’t provide any back support.  Getting another air mattress wasn’t feasible as it would be impossible to transfer me between bed and wheelchair.  Fortunately, the occupational therapist, “Mandy”, located a thicker anti-bedsore mattress, made from a type of memory foam, which curved in the right places and my back pain days were over.

The new routine:

  1. Joy of joys, bedbath time was now 7:30am instead of 3:00am and I could finally sleep through the night again!
  2. Physio and occupational therapy (OT) followed breakfast.  The physio sessions were similar to those in ICU; the purpose of which was still to keep the muscles and joints flexible.  OT, however, focused on functionality.
  3. Food was still delivered through the PEG tube but at intervals during the day and not continuously as it had been in ICU.  The dietitian tweaked the feed and some were replaced with a protein drink which I could suck through a straw.
  4. The new speech therapist added a lot of exercises to my routine and I was able to start chewing and swallowing soft food 3 weeks later and then solid food by mid-October.  I didn’t have much of an appetite and had to force myself to eat 3 times a day.
  5. The nurses turned me every 2-3 hours during the day but I lay on my back at night as I still had to be hooked up to the Bi-PAP when I slept.
  6. When the weather was good I was taken into the garden.  Sunshine and fresh air on my skin, hearing and seeing birds, and smelling earth and lawn were wonderful sensations and did a lot to improve my mood.  When I was outside I didn’t feel so trapped and imprisoned.

When the speech therapist and dietitian were satisfied with my progress they advised the doctor that the PEG tube could be removed; a procedure which was uncomfortable, a bit painful, and took a while to achieve as scar tissue had formed around the tube inside my abdomen.  I was happy to get rid of the tube and the hole didn’t need to be stitched as it closed by itself within a few days.  Another step forward.

I had neck control by the time I got to the clinic but, like a baby, I had to learn to sit. Mandy – with the help of 2-3 nurses – sat me up, swung my legs over the side of the bed, slid me across a transfer board into the wheelchair and placed a pillow on my lap to support my arms and hands.  I only lasted 15 minutes the first time, before begging to go back to bed as my bum, back and shoulders were very sore.  Gradually, my core muscles strengthened and I could sit for longer periods of time.  

The clinic also operates as a step-down facility, frail care and palliative care.  It has a hair salon, retail pharmacy, dentist, GP rooms, restaurant and library.  I had a haircut as soon as I could sit comfortably in the wheelchair and went to the dentist to have my teeth cleaned.  Bliss!  By the time I went home I could sit for up to 1,5 hours in the morning and an hour in the afternoon.

While in ICU, there were 2 other GBS patients in the hospital: a 10-month old baby boy who had floppy arms and legs, and a woman in her 60’s whose legs were paralysed.  At the clinic there were 3 GBS patients: a 2-year old girl whose legs were very weak; “Sam” a man in his 70’s who had had GBS 8 years previously and was now recovering from a knee replacement; and “Mike”, in his 40s, whose face, arms, shoulders and legs were affected.  Mike had been in a hospital for 2 weeks prior to entering rehab.  His speech was slurred, he could eat soft food only, he couldn’t move his arms at all but he could shuffle-walk with one nurse on either side to support him.  Only Sam’s lower body and legs had been affected by GBS but despite making a full recovery he has continued to experience the tight band of chest muscles.

Exercises were either done on the side of the bed or in the gym.  As the myelin sheath regenerated I could move my arms and legs slightly.  Some days I wept during an exercise session in total frustration at not being able to do the simplest things and the realisation that recovery was going to take a very LONG time.  A band of chest muscles tightened painfully whenever we did certain exercises and severely limited forward, backward and sideway movements, but this eventually eased when my core muscles strengthened.

Mandy was always kind and encouraging.  She let me cry and then we would get back to work.  We’d talk about the current Masterchef and Idols series on TV, debated about who would probably be eliminated next and compared notes about the people we would like to win.  As with Jeff in ICU, the chats with Mandy cheered me up and helped take my mind away from the day-to-day monotony.  It was also her idea, the day after admission, to give me a bell which could be pressed with the side of my head.  Such a small thing made a huge diference and I was no longer afraid and alone as I could call for help when needed.

My interactions with the nursing staff were good too.  The student nurses knew that I had been a registered nurse and often asked me questions about various medical conditions.  One of the sisters set an “open-book” quiz one quiet Saturday and I was asked to supervise while the sister carried on working.  It didn’t take long to work out that 2 nurses were sms’ing each other.  Once the nurses realised that I knew what was going on they got back to answering the quiz without the aid of their mobiles!  🙂

I had built up the hope to be home by Christmas and by the beginning of the month the looming spectre of spending Christmas in hospital generated a lot of emotional distress.  I couldn’t go home, not even for a few hours, as we never knew when the tracheostomy would need suctioning and we couldn’t chance the long drive home.  My friends and colleagues rallied around again, making a surprise visit 10 days before the dreaded day laden with trees, decorations, tinsel and lights.  My room looked very festive and that really lifted my mood.  Members of the local Methodist church arrived on the 24th after supper and walked up and down the passage, and in and out the rooms, singing carols. On the 25th we went to the clinic’s restaurant and one of my friends fed me.  It was a great day, despite my limitations.

The bane of every day had continued to be the tracheostomy but I weaned myself off oxygen and persevered with using the fenestrated tube during physio, OT, and visiting hours.  During the night of 22 December I woke up, fighting to exhale against the pressure from the Bi-PAP.  That was the 3rd time in as many nights and I realised that it was time to say goodbye to the Bi-PAP.  I rang the bell and asked the night sister to disconnect the machine, and never needed it again.

By mid-January the doctor told me it was time to go home.  We were thrilled and afraid at the same time.  How would we cope with the constant need for suctioning?  The tracheostomy tube was removed a few days later and – instantaneously – I never needed to be suctioned again. The excessive secretions had been a response to the constant irritation caused by the tube inside my trachea.  I stopped coughing and could finally speak, drink and eat whenever I wanted to.  The holes in my neck and trachea would close slowly over the next few months, so a dressing was used to cover the hole.

My husband had already prepared for my homecoming and built ramps from the road to the front gate and from the garden into the house.  He now ordered a hospital bed which was delivered on 30 January.  I still needed a nurse as I couldn’t do anything for myself and the clinic arranged for a home care service to bring a nurse to the clinic to learn how to do my exercises.  “Emma” would live in for 7 days and nights, after which a second nurse would take over and they would alternate with each other.

On 31 January, Emma arrived early in the morning and my husband arrived a little later to pack my things.  We had hired a vehicle into which the wheelchair was pushed, with me on it, and off we went.  The event I had been looking forward to for 8,5 months was finally happening.  I was going HOME!!

© louisehasgbs 2014. All rights reserved.

Disclaimer: This is a personal account of my experiences. Discuss all treatment, therapies, medication, diet and supplements with your own doctor and/or specialist.

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