The challenge with C and K, the speech therapists, is to control the giggling. It's tricky to talk when you are laughing. Today Liz was to have a video fluroscopic swallowing examination (VFSE) to observe her swallow, and help the therapists decide how safe it might be for Liz to begin to drink water and eat. They went into the X-ray booth with Liz under strict instructions not to laugh. Liz was trying hard to keep a straight face, but then K appeared wearing a camouflaged lead lined jacket with Dr AHMED written across it. The absurdity was too overpowering. We mused that for the therapist, this situation is completely normal. For others it is a strange comic world.
Elizabeth was sent about 80 cards over four months. These wonderful offerings of love and affection where hung by Joanna on strings around her bed, like washing on a line. When Minal called in to see Liz, she saw the cards and said, "Oh, I should of brought a card." Liz replied "I wouldn't bother- look I've got loads."
In the evening Elizabeth's nurse came round the ward doing the observations. It is part of the ritual on every ward. The nurse asked Liz if it was a convenient time to take her blood pressure. Liz said "Sorry, not now, can't you see I'm busy." (She was playing Candie-Crush on her friends tablet.)
Liz was finally told she could move from pureed food to 'soft solids'. This meant rice, and and exploration of the Caribbean menu. Liz found that the Caribbean menu and Kosher menu were superior to other menus. The chicken came with (shock, horror) a bone. Behind Elizabeth's bed was a sign stating what Liz could eat. For some strange reason the sign said 'no soaked bread'. That sign didn't last long however.
When Elizabeth arrived in Leicester she had a number of fittings from Sheffield attached to her. A trachy, and her PEG feed. These were viewed with great caution by the Leicester staff. While on ICU in Leicester, Elizabeth's chest infection resulted in such a strong cough that she coughed out the trachy in the night. It was with a great sense of relief that the doctors removed the Sheffield trachy and fitted a good standard Leicester job. They had found fitting Leicester equipment to the Sheffield interface very stressful, and pipes regularly came adrift. The Peg too presented it's own challenge. Liz had to have an endoscope so that the doctors could see what had been fitted into her stomach. It was a fine day when she was at last free of all appendages.
Being one of the constants on Bay 2, the staff relied quite heavily on Liz's eagle eyes. Liz knew which of her elderly compatriots on the ward had had their medication. She challenged M when she tried to get out of bed without nursing help. Liz pointed out that she was now part of Baywatch.
Pooja came to visit Liz. She said to Liz that she couldn't wait to tell her some of her gross stories for working in Primark. Liz said 'I've got lots of gross stories too, there are mostly to do with poo. Pooja said "same! my stories are to do with poo too."
Sunday, 31 March 2019
Saturday, 30 March 2019
6) From My Side - Funny That (b)
On a warm autumn morning, we sat with Elizabeth on the patio at the back of the ward. This area was developed long ago to ensure patients receive a lot of fresh air, a curative I still support. A nurse but her head of of the door and asked is any of us had seen 'M'. M was the most able patient on BIU, and was able to walk around on his own. He sometimes came out onto the patio to smoke, but always accompanied by a nurse. Elizabeth had seen M come out and said 'he went that'a way'. The nurse hurried in and a second later five nurses rushed out. On of them called security. There all headed off in different directions. As we guessed, M was on probation, though this was supposed to be confidential information.
On Elizabeth's last day on ICU, a good friend and her two daughters visited in the evening. The younger daughter was not feeling too well, and after a while asked to leave. I went with her out to find some fresh air as she was feeling faint. The the corridor she fell to her knees and slumped on the floor. She explained that she didn't like hospitals and was feeling light headed. A nurse noticed and within seconds they had jumped into action. She was ushered into a side room and obs were made (blood pressure, temperature, heart rate.) She received excellent nursing care that evening- couldn't have been in a better place.
As Christmas approached on BIU, there was great excitement about the growing generous prises on offer in the Christmas ward raffle. We, and other visitors bought our tickets. One time we visited Elizabeth we had to wait while a nurse helped her with a bed pan. The curtains were drawn and the nurse carried out a brimming bowel of warm urine. "Why not put it in the raffle?" Elizabeth called out.
From university tutorials to 'Communication Group' - what are contrast. When Liz began to be able to speak again a number of people asked if she was Welsh?, or French. In the group Liz was told of for giggling too much. She found that she was surrounded by people with serious brain injuries, but unlike her, these had affected memory.
With the date of the BIU Christmas party drawing close, the pressure was on to sell as many raffle tickets, and 'guess the name of the dog' tickets as possible. Liz went with J into the canteen where they touted for business. Liz called out "Guess the name of the dog......guess my name." It all became very confused.
Our friend James visited Elizabeth on the day she moved from BIU to NRU. The staff made a guard of honour by the door, and Elizabeth left in her wheelchair with James pushing her. She got a warm welcome at NRU. She was offered a cup of tea by the housekeeper, which was very kind, except she was still 'nil by mouth', being PEG fed.
Nearly all of Elizabeth's therapists were excellent. One that stood out as not that spent nearly all of her allotted time with Liz trying to work out how to put the breaks 'on' on her wheelchair. This was extraordinary for someone who works with disabled people everyday. In the end she did a youtube search for a demonstration video.
On Elizabeth's last day on ICU, a good friend and her two daughters visited in the evening. The younger daughter was not feeling too well, and after a while asked to leave. I went with her out to find some fresh air as she was feeling faint. The the corridor she fell to her knees and slumped on the floor. She explained that she didn't like hospitals and was feeling light headed. A nurse noticed and within seconds they had jumped into action. She was ushered into a side room and obs were made (blood pressure, temperature, heart rate.) She received excellent nursing care that evening- couldn't have been in a better place.
As Christmas approached on BIU, there was great excitement about the growing generous prises on offer in the Christmas ward raffle. We, and other visitors bought our tickets. One time we visited Elizabeth we had to wait while a nurse helped her with a bed pan. The curtains were drawn and the nurse carried out a brimming bowel of warm urine. "Why not put it in the raffle?" Elizabeth called out.
From university tutorials to 'Communication Group' - what are contrast. When Liz began to be able to speak again a number of people asked if she was Welsh?, or French. In the group Liz was told of for giggling too much. She found that she was surrounded by people with serious brain injuries, but unlike her, these had affected memory.
With the date of the BIU Christmas party drawing close, the pressure was on to sell as many raffle tickets, and 'guess the name of the dog' tickets as possible. Liz went with J into the canteen where they touted for business. Liz called out "Guess the name of the dog......guess my name." It all became very confused.
Our friend James visited Elizabeth on the day she moved from BIU to NRU. The staff made a guard of honour by the door, and Elizabeth left in her wheelchair with James pushing her. She got a warm welcome at NRU. She was offered a cup of tea by the housekeeper, which was very kind, except she was still 'nil by mouth', being PEG fed.
Nearly all of Elizabeth's therapists were excellent. One that stood out as not that spent nearly all of her allotted time with Liz trying to work out how to put the breaks 'on' on her wheelchair. This was extraordinary for someone who works with disabled people everyday. In the end she did a youtube search for a demonstration video.
Sunday, 24 March 2019
5) From my Side - Funny that (a)
Elizabeth had to, once again, get to grips with control over her bladder. This time it was by herself. One day on BIU she was having to spend ages on the bed pan. The curtains were drawn. Quietly she waited. Then Charlotte her speech and Language therapist put her head round the curtain and asked if they could do a session. After fifteen minutes, she left. All that time Liz had been on the bed pan.
One day after some patient waiting, Liz gave up. We came back into the room to be with her. I had a large parcel from Auntie Mary in America to open. Inside were 'T' Shirts for all of us with 'Team Elizabeth' on them. We laughed with delight, ...and Elizabeth was able to pee. Shame bed pan was not there this time.
Elizabeth remembered all the strange sounds from Sheffield NCC. When she was able to speak she gave us a noise sample from the ward, including her neighbour's loving husband B calling out to his wife, and singing songs. "M, can you hear me M. It's B here by love."
On the 31st of October, J, one of the nurses on BIU who shared Elizabeth desire for fun, took a hospital sheet and cut eye holes in it. She put it over Elizabeth and they set off at break neck speed around the hospital with Elizabeth going "Boo", in a gentle, 'cork popping' voice. C, Liz's Speech Therapist, said Boo was a good sound to make. Very therapeutic.
When Elizabeth moved from Intensive care to BIU we discovered one thing was left behind. In Sheffield Liz had been given her diary, which staff, visitor and family had filled in every day. One on had told us that there is a protocol that comes with the diary. As the record contains 'traumatic events', it is classed as a medical record, and can only be given to a patient after counselling has also been offered. We understood this, it sounded like a caring and protective approach. However I think for the staff , this was unknown territory. We were their first family to use a diary (being from Sheffield). When Margaret and I went to Intensive care, we waited 30 minutes, then we were ushered into 'the bereavement room'. This room is nicely decorated in complete contrast to the normal waiting room. I wondered if we were to be told that the diary had died. But no. I thin the ward sister was concerned that we would be upset that we could not have the dairy. Once the rationale was explained we understood immediately and there was no problem. We all breathed a big sign of relief.
When Elizabeth started to breath independently from the ventilator, she was able to have a cap fitted over the traccy valve. A big sneeze could send this cap flying across the room. Elizabeth was also able to start to discover what was left of her voice. Up to this point we were using a letter chart to spell out words and converse. Elizabeth said something that was clearly very important, but we could not just get it. After a number of frustrating attempts, we reverted to the letter chart. The word was "wahoo".
One day after some patient waiting, Liz gave up. We came back into the room to be with her. I had a large parcel from Auntie Mary in America to open. Inside were 'T' Shirts for all of us with 'Team Elizabeth' on them. We laughed with delight, ...and Elizabeth was able to pee. Shame bed pan was not there this time.
Elizabeth remembered all the strange sounds from Sheffield NCC. When she was able to speak she gave us a noise sample from the ward, including her neighbour's loving husband B calling out to his wife, and singing songs. "M, can you hear me M. It's B here by love."
On the 31st of October, J, one of the nurses on BIU who shared Elizabeth desire for fun, took a hospital sheet and cut eye holes in it. She put it over Elizabeth and they set off at break neck speed around the hospital with Elizabeth going "Boo", in a gentle, 'cork popping' voice. C, Liz's Speech Therapist, said Boo was a good sound to make. Very therapeutic.
When Elizabeth moved from Intensive care to BIU we discovered one thing was left behind. In Sheffield Liz had been given her diary, which staff, visitor and family had filled in every day. One on had told us that there is a protocol that comes with the diary. As the record contains 'traumatic events', it is classed as a medical record, and can only be given to a patient after counselling has also been offered. We understood this, it sounded like a caring and protective approach. However I think for the staff , this was unknown territory. We were their first family to use a diary (being from Sheffield). When Margaret and I went to Intensive care, we waited 30 minutes, then we were ushered into 'the bereavement room'. This room is nicely decorated in complete contrast to the normal waiting room. I wondered if we were to be told that the diary had died. But no. I thin the ward sister was concerned that we would be upset that we could not have the dairy. Once the rationale was explained we understood immediately and there was no problem. We all breathed a big sign of relief.
When Elizabeth started to breath independently from the ventilator, she was able to have a cap fitted over the traccy valve. A big sneeze could send this cap flying across the room. Elizabeth was also able to start to discover what was left of her voice. Up to this point we were using a letter chart to spell out words and converse. Elizabeth said something that was clearly very important, but we could not just get it. After a number of frustrating attempts, we reverted to the letter chart. The word was "wahoo".
Saturday, 23 March 2019
"Putrid"
Thérèse Raquin
Described as 'putrid' by Le Figaro in 1868, this is my take on Emile Zola's story.
Beautiful orphan, Therese, a pawn,
Trapped, embittered, imprisoned, lovelorn.
Laurent, self-seeking, cankerous, stultified
Fatal attraction, evil - personified.
With Madame Raquin, a trio met well,
Fatal attraction, evil - personified.
With Madame Raquin, a trio met well,
Locked together in their own living hell.
A putrid, soulless, narrative plot,
Echoes a voice "out, out, dam spot"
The consequence of evil is derangement we find,
With us, the reader following surely behind.
With us, the reader following surely behind.
Tuesday, 19 March 2019
4) From My Side - what the doctors said
Well, they haven't said a lot, which is probably the right thing to do. I was impressed with Dr B, the neurologist over the first weekend at the Royal Hallamshire. He was able to communicate well with Elizabeth. He noted that she had been fully aware of what was happening to her when the haemorrhage occurred. He was aware of all her ability, especially how she could communicate. We noted how the doctors and nurses, even though Elizabeth seemed very unwell, directing their gaze and conversation to her, and not her parents. Dr A, who was clearly a lovely man, did shout at Elizabeth, which was not necessary, because her hearing has been completely unaffected. Dr H assessed Elizabeth's eye sight. He noted that the muscles in her eyes were quite severely affected.
We understood that from the initial scans of Elizabeth's brain, that a bleed had occurred in the pontine area of the upper brain stem. This is where a mass of neurological fibers travel to all parts of the brain. Every muscle that has voluntary control via the brain was affected, but particularly on Elizabeth's left side. Even in the early days though, Elizabeth's physios felt that they could detect vague movement in her left side, which was encouraging.
The conjecture was that there may have been a cavanova, or group of capillaries, in that part of the brain, where a slow build up of blood had been occurring, leading to a rupture. We had some conversation about where Elizabeth's experience of the skin condition Coup de Sabre, facial scaring caused by a a manipulative autoimmune response, similar to psoriasis, may relate to the haemorrhage. Way it the course of the injury? Was it a consequence of the injury, the bodies way of reacting to a problem it detects but can do nothing about? Or the worst option, did the medication Elizabeth take to inhibit the Coup De Sabre scaring actually weaken her internal brain vessels?
The doctors we spoke to all felt that the last explanation was very unlikely. The fact that Elizabeth has two very rare conditions did indicate that their might well be a connection between the two, but we do not know the causal link.
So the doctors say very little, and the nurses and therapists do all the work, and we are grateful, because they are all doing their jobs well.
We understood that from the initial scans of Elizabeth's brain, that a bleed had occurred in the pontine area of the upper brain stem. This is where a mass of neurological fibers travel to all parts of the brain. Every muscle that has voluntary control via the brain was affected, but particularly on Elizabeth's left side. Even in the early days though, Elizabeth's physios felt that they could detect vague movement in her left side, which was encouraging.
The conjecture was that there may have been a cavanova, or group of capillaries, in that part of the brain, where a slow build up of blood had been occurring, leading to a rupture. We had some conversation about where Elizabeth's experience of the skin condition Coup de Sabre, facial scaring caused by a a manipulative autoimmune response, similar to psoriasis, may relate to the haemorrhage. Way it the course of the injury? Was it a consequence of the injury, the bodies way of reacting to a problem it detects but can do nothing about? Or the worst option, did the medication Elizabeth take to inhibit the Coup De Sabre scaring actually weaken her internal brain vessels?
The doctors we spoke to all felt that the last explanation was very unlikely. The fact that Elizabeth has two very rare conditions did indicate that their might well be a connection between the two, but we do not know the causal link.
So the doctors say very little, and the nurses and therapists do all the work, and we are grateful, because they are all doing their jobs well.
Saturday, 16 March 2019
3) From My Side - The first week
We were introduced to the Intensive Care 'diary'. A charity called Neurocare provides each patient with a diary which can be used by staff and visitors to make a record of time in NCC. The diary starts with H, and D, a student nurse, chatting about their care of Liz in the early days. Margaret and I started writing on the 24th September. We recorded the many visitors who began arriving. On the Monday we realised that after the joy of seeing Elizabeth survive, and come out of sedation, there was still a long bumpy road ahead. Elizabeth acquired a chest infection. It was standard infections taking advantage of her weakness. The secretions in her chest became intense. Numerous times in the day a nurse was required to lower a suction pipe down into her chest to clear the phlegm. Elizabeth became listless and lethargic. She found it an effort to lift her right arm, and had her eyes closed most of the time, drifting in and out of consciousness. We were also painfully aware of her discomfort. Liz was unable to move nearly all the muscle that are controlled by conscious effort. This included her tongue, and facial muscles. She was thirsty, yet could not drink.
Elizabeth was visited by her grandmothers and aunts. Her pastor from Sheffield, and ours from Leicester visited. One of Elizabeth's closes friends Anna, was on her university year abroad, along with her two past flatmates, Tash and Mary.
Elizabeth's Leicester friends all came, something they have maintained. The list is now at 158 different visitors. many have visited Liz in Sheffield and Leicester too.
Our good friends Tom and Ellie fixed it for us for Joanna, Margaret and myself to lived in Ellie's parents house, which, when the traffic was calm, was only twenty minutes drive away from the hospital. This was a wonderful gift, because it also came with the bonus of Ellie's Aunt, Pat. Pat was very experienced in supporting traumatised families as she had been a Hillsborough volunteer, supporting a bereaved family after the tragic accident killed many Liverpool and Sheffield fans in April 1989.
Loxley became the place we were able to retire to in the evenings and relax. I found that getting up early and walking in the nearby countryside was a great blessing. I met local people and chatted with them, including Dhilar, an Iraqi Kurd, who owned a local corner shop. I enjoyed buying local produces like milk from 'Molly Cow', and oven bottom buns. See https://parentsguidetopets.blogspot.com/2018/10/learning-about-loxley.html for a description on our time in Loxley. Also https://parentsguidetopets.blogspot.com/2018/10/the-names-of-most-charming-of-world-no.html for my thoughts on Thomas Haliday, a historical figure from the Loxley valley.
Helen and Nigel, the owners of the house we stayed in, were living in Scotland, having recently retired. Nigel had worked as a GP in Sheffield for many years. I enjoyed borrowing his A to Z map and noticing that he had ancient post-it notes saying things like, "26, Almond Cres. Mrs Brown, chesty cough, week heart." Nigel also taught at Sheffield University and represented GPs on the BM, visiting almost every country in the world. Helen was a historian at Sheffield University. Her sister Pat looked after us, but we were able to meet Helen just before our time in Sheffield came to an end. We shared a meal at the Admiral Rodney, a local pub in Loxley. Helen showed me some of the books she had written about local history, which were fascinating to read.
We developed a routine. Both of our work places gave us great support and we were off until half term. I woke early and went for a morning walk, exploring the edge of Sheffield as it heads into the Peak District. Just before eleven am we headed off to the hospital, up the notorious Hagg Hill, a hill all Sheffield cyclists know well. We were able to park in the hospital multi story car park most of the time, but there was a fierce completion for the spaces, which also included parking next to pillars which required expert skills in parking and squeezing through tight spaces. We were able to get a parking permit reducing the cost of parking considerably. Sometimes we parked at a local pub called the Francis Newton. From the car park we walked into the outpatient department, under the road and into the Hospital building, past the chapel, with it's open doors and empty enticing space. From here we had the eleven stories to ascend. Once the lifts must have been the pride of the building. Twenty lifts, and a small tight staircase, there almost as an after thought. Now the lifts were quite alarming, with only two or at the most three working. Once when we were there, a lift stopped, the doors opened, and the door was four feet above the floor level. We witnessed a strong man lift down a frail old lady with a stick. We entered one lift as a roller from the doors fell off and crashed to the floor. No one was hurt. I reported it to a nurse and we completed an online risk assessment. This evidently lead to an official apology from a weary handy man who had obviously been battling with these lifts for many years, and was resigned to failure. I thought of a lion tamer at the zoo who's lions would not do what they were told. See https://parentsguidetopets.blogspot.com/2018/10/story-on-stairs.html.
We realised that we would need to break up the days, and ensure that Liz got a rest from us. Also Joanna took charge of making sure she received the right number of visitors to match her energy levels. Liz was consistently lovely to her visitors. The care Liz received was exemplary.
Elizabeth was visited by her grandmothers and aunts. Her pastor from Sheffield, and ours from Leicester visited. One of Elizabeth's closes friends Anna, was on her university year abroad, along with her two past flatmates, Tash and Mary.
Elizabeth's Leicester friends all came, something they have maintained. The list is now at 158 different visitors. many have visited Liz in Sheffield and Leicester too.
Our good friends Tom and Ellie fixed it for us for Joanna, Margaret and myself to lived in Ellie's parents house, which, when the traffic was calm, was only twenty minutes drive away from the hospital. This was a wonderful gift, because it also came with the bonus of Ellie's Aunt, Pat. Pat was very experienced in supporting traumatised families as she had been a Hillsborough volunteer, supporting a bereaved family after the tragic accident killed many Liverpool and Sheffield fans in April 1989.
Loxley became the place we were able to retire to in the evenings and relax. I found that getting up early and walking in the nearby countryside was a great blessing. I met local people and chatted with them, including Dhilar, an Iraqi Kurd, who owned a local corner shop. I enjoyed buying local produces like milk from 'Molly Cow', and oven bottom buns. See https://parentsguidetopets.blogspot.com/2018/10/learning-about-loxley.html for a description on our time in Loxley. Also https://parentsguidetopets.blogspot.com/2018/10/the-names-of-most-charming-of-world-no.html for my thoughts on Thomas Haliday, a historical figure from the Loxley valley.
Helen and Nigel, the owners of the house we stayed in, were living in Scotland, having recently retired. Nigel had worked as a GP in Sheffield for many years. I enjoyed borrowing his A to Z map and noticing that he had ancient post-it notes saying things like, "26, Almond Cres. Mrs Brown, chesty cough, week heart." Nigel also taught at Sheffield University and represented GPs on the BM, visiting almost every country in the world. Helen was a historian at Sheffield University. Her sister Pat looked after us, but we were able to meet Helen just before our time in Sheffield came to an end. We shared a meal at the Admiral Rodney, a local pub in Loxley. Helen showed me some of the books she had written about local history, which were fascinating to read.
We developed a routine. Both of our work places gave us great support and we were off until half term. I woke early and went for a morning walk, exploring the edge of Sheffield as it heads into the Peak District. Just before eleven am we headed off to the hospital, up the notorious Hagg Hill, a hill all Sheffield cyclists know well. We were able to park in the hospital multi story car park most of the time, but there was a fierce completion for the spaces, which also included parking next to pillars which required expert skills in parking and squeezing through tight spaces. We were able to get a parking permit reducing the cost of parking considerably. Sometimes we parked at a local pub called the Francis Newton. From the car park we walked into the outpatient department, under the road and into the Hospital building, past the chapel, with it's open doors and empty enticing space. From here we had the eleven stories to ascend. Once the lifts must have been the pride of the building. Twenty lifts, and a small tight staircase, there almost as an after thought. Now the lifts were quite alarming, with only two or at the most three working. Once when we were there, a lift stopped, the doors opened, and the door was four feet above the floor level. We witnessed a strong man lift down a frail old lady with a stick. We entered one lift as a roller from the doors fell off and crashed to the floor. No one was hurt. I reported it to a nurse and we completed an online risk assessment. This evidently lead to an official apology from a weary handy man who had obviously been battling with these lifts for many years, and was resigned to failure. I thought of a lion tamer at the zoo who's lions would not do what they were told. See https://parentsguidetopets.blogspot.com/2018/10/story-on-stairs.html.
We realised that we would need to break up the days, and ensure that Liz got a rest from us. Also Joanna took charge of making sure she received the right number of visitors to match her energy levels. Liz was consistently lovely to her visitors. The care Liz received was exemplary.
Friday, 15 March 2019
Indeed - Candide
Voltaire, up for controversy, had a few spells in the Bastille before moving to Wandsworth, London. He was feted by George I and met Jonathan Swift. lived in the Prussian court of Frederic the Great. But he published Candide (or The optimist) when in Paris in 1759.
This 'parabolic' journey through an imagined world is fascinating. It reminded me of 'Swift' satirical writings. It is cutting and brutal, full of wonder and coincidence. Candide meets bonny Prince Charlie in Venice. He ends up living a quiet (well, married) life in Istanbul.
Pangloss- ever faithful to the doctrine of "This is the best of possible worlds", has his theories tested to the limit as events unfold, like the 'flap of a butterfly's wing' as fractured in Chaos theory.
The moral - (if there is one) - is to live as a farmer in an imperfect world with the ones you are faithful to, (even when the gloss has worn off). For more listen to In our Time with Melvin Bragg
This 'parabolic' journey through an imagined world is fascinating. It reminded me of 'Swift' satirical writings. It is cutting and brutal, full of wonder and coincidence. Candide meets bonny Prince Charlie in Venice. He ends up living a quiet (well, married) life in Istanbul.
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| Candide's journey around the world. (He even speaks of traveling to China.) |
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| Thank you for this public service. |
The moral - (if there is one) - is to live as a farmer in an imperfect world with the ones you are faithful to, (even when the gloss has worn off). For more listen to In our Time with Melvin Bragg
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