Message Thirty Eight

Elizabeth bumped into C, her Speech Therapist today. C said that 'Boo' was a great word to develop mouth muscles.   Liz and J, her nurse, had been racing up and down the hospital corridors in her wheelchair with Liz dressed in a hospital sheet, terrorising the place.  They went back to see her old nurses on ICU.   Liz even asked for her Critical Care diary, but the answer was "no".  It's a serious business this diary.

Liz visited the Rehab ward in the afternoon to attend their Halloween party.  She was suitably dressed, and it was a chance to look round the new venue (through eye holes in the sheet).

Liz continues to be doing really well, with lots of new movements in her left leg.  She also passes the time developing her new career in 'lay down' comedy.  She does impressions of the patients and nurses on the ward, and shows off her latest newly acquired skills, such as writing 'Hello Dad' on pages of my new diary.  Sarah, Jo and Liz made up a puppet show together.

This evening Jo played the guitar.  I played the glockenspiel, and Liz sang.  She said she felt like an adolescent boy with a breaking voice.  At the end of the evening the Bennetts visited and we said prayers together.

Message Thirty Seven

"I'm ok.  Thank you for reading the blog and for the cards and letters.  They are so encouraging.  And having visits is really fun."  

(Message from Elizabeth.)

When we arrived Elizabeth told us, "today is Christmas."  S, the senior physio, had removed her tracheostomy and thrown it away.  The cartilage in her trachea will close up now, and the skin on her neck will heal over.  S also  said that  she will be moving to rehab in a few days.  This cued-up a certain Amy Winehouse song about going to rehab.

And it was Christmas as we received a large parcel from Margaret's sister in America. Mary had designed T shirts for us all with Elizabeth's favorite colours and a wonderful message.

Cousin Sarah has been able to take advantage of a few free days from lectures to visit us all.

James and Claire (pastors) brought a large signed card from the church.  Tim, Audrey and Karen Dixon (of Dixon Farm and summer camps fame) visited.  Vendela, and Yewade, special 'Margaret and Andrew' friends visited.

It was another great day with Liz's left leg getting visibly stronger.

Message Thirty Six

I am preparing to slow down with these messages and pass on news say three times a week.

Today was action packed with lots of visitors.

Emma (cousin) and Joanna (sister) sang worship songs in the morning with Liz.  They went outside in the freezing cold and Emma donated Liz her cardigan.  In the afternoon Doreen, who has known Liz since she was little, visited and we played a game of charades together. Doreen and I were amazed that Liz got Doreen's impression of a 'tortoise' immediately.  I am aware that Liz is highly trained in this game.

Then Asli, Taybeah and Komal came.  They have all seem Liz when she was quite poorly, and it was great to see them being able to get back into their usual banter. 

Then Ruth (aunt) and Granny (self-explanatory) called in on their journey from Newcastle to Bedford. 

Margaret and I are both back at work this week.  We reflect that all our needs have been met over these last 5 weeks and we are grateful to so many people for rooting for Elizabeth and us.  We are truly blessed. 

A special gift made for Elizabeth by Joanna's friend Shreeya

Message Thirty Five

Adam (flatmate) arrived from Sheffield.  Elizabeth said "thanks for coming to see me and thank you for saving my life."  Adam said it was nothing.  "Don't mention it."  They were able to talk about their experiences of that fateful day.

We went for a walk around the hospital (Liz in the wheelchair, but this time she was pretty much sitting upright.  Her head is still supported.)  Liz noted that she smashed all previous records by staying in her chair for 4 hours.

In the evening Adam returned to Sheffield, and Emma (cousin) arrived. We had a long chat about whether Elizabeth could make it in a new career as a 'stand up' (sic) comedian.  I told her about Lee Ridley, also known as 'Lost Voice Guy'.  He won acclaim at the Edinburgh fringe this year for his joke, “When I realised I’d never be able to talk again I was speechless.” 

Message Thirty Four

We were early to the ward today, racing to get there before my sister and her husband arrived from Manchester.  Liz was looking good.  The plan for the day was for her to receive her first MRI scan. She gets the results on Monday.  With a room full of visitors, Paul and Frances, Lala, Max and Ben, the three of us - what did we have?  Surely a choir.  Frances is leading a choir of international language students these days.  She is a great teacher, and the words were simple.  We all sang together.  Then Lala and Frances gave us an impromptu duet.  It was stomping good fun.    Max and Ben said that they could not perform a rap, because Liz didn't have the strength to punch them if she wanted the rap to stop which apparently is de rigeur. Liz then did some one handed boxing with Lala.  The rap is on its way we trust. 

Garry visited in the evening.  He was preparing to travel to Sheffield, until we established the post code.  Liz was breathing more easily today.  Is Liz's left thumb moving under her command? That's the next question.  Time will tell. 

Picture by Max, with help from his friend Ben

Message Thirty Three

It was another lovely day.  Liz was a bit more clogged up in her chest and again managed to cough the tracchy valve off, expelling it about 2 meters.

It was a day of lots more exercises with tongue, lips, mouth (Speech therapy). Then arms, legs, buttocks (Physio), and sitting at the edge of the bed, still very much supported (OT).  Margaret and I were able to wheel Liz outside into the sunshine at the back of the ward.  It was very peaceful. We went and inspected the Victorian facade, which is now the back of the hospital.  The front is a curious conglomeration of out-houses and corridors.

Liz was visited by Sara who gave her a toy dragon to join the cat.  In the early evening Kate and Chris came with two of their girls.  Kate led us in singing a song called Reckless Love.   Interestingly it's also the song Josh sang to her last week.

Liz tried to join in.  Her voice added a sort of gravely, 'heavy metal' element to the proceedings.

The back of the hospital

The front entrance

Message Thirty Two

More to say?  Yes - today Liz's student physio, K, showed us how Liz is developing strength in the top of her left leg.  The physios also felt they saw a delayed twitch in her left thumb.  All good news.

Today Liz had a shower for the first time in 5 weeks.  She went in a plastic wheelchair.  E, her nurse, gave her a double french plat.

Mary, a pastor at our church visited, as did Tom and Philippa. Tom brought some music, and kindly left Liz with his glockenspiel to experiment with. (He was thinking of instruments that can be played with one hand.)

In the evening we started our new story "The Tenderness of Wolves."

Message Thirty One

We are aware that though Liz is showing a lot of resilience, she is very upset by her situation, and so are we.  Today we went back to Critical Care to collect her diary, which has information from us, staff and visitors.  We were a bit bemused when after some time of waiting we were caringly ushered into a room clearly designed to be the room where you hear bad news.  I wondered whether we were about to hear that the diary had sadly passed away.  No, the diary is alive and well, just we can't have it.  As Liz has moved out of Critical Care, the diary stops where it is.  It becomes like 'medical records' and can only be handed over to Liz if she requests it, in conjunction with support and counselling in case she finds the retelling of the story traumatic.  We understood this.  It reminded us that this has been a traumatic time, and perhaps we have been getting a bit too used to it.

Liz had Charlie and Jill, and Dave and James visit her this afternoon.  She showed off her new voice to them.  We met Charlotte, the Speech Therapist for the Brain Injury Unit. She said that in about 5 days the tracheostomy is likely to be removed from Liz's trachea.  She can then try to regain a voice that sounds more like her. 

Message Thirty

We have had a lovely day.  Liz moved to the Brain Injury Unit because she no longer needs high intensity nursing.  At the moment she has her own room (hence yet another picture of the famous card collection.)  She will soon have the tracheostomy removed and her neck will heal up.

Liz has at last been able to chat away freely.  Her words are becoming clear and precise.  She had a succession of staff coming over from Critical Care to say good bye, including J and E her physios, who lovingly gave her a last bit of Critical Care physio. 

Margaret has started a phased return to work - so far so good! and she will still be able to see Liz every day for a few of hours.  I have this week as sick leave and will be back into work next week.  For both of us, work could not have been kinder.

Liz was visited by Evie, who made a special journey from Nottingham.  Also Lois, who is on holiday.  Susan and David, our pastors visited.  The last time they saw Liz she was in significant pain, and could not do much.  Now she is getting stronger every day, and we keep noticing the latest thing she can do. 

Elizabeth has an amazing sense of humour, and was particularly amused by the antics of our pastor, who never fails to entertain.

The decorations that I have put up 5 times now.

New Address - Brain Injury Unit, Leicester General Hospital, Gwendolen Road, Leicester LE5 4 PW Visiting times are 11:00 to 20:00 (except 14:00-16:00 Siesta time).

Message Twenty Nine

Today for me was about Elizabeth's new 'tracchey' voice.  It will be much easier to speak when the tracchey is finally removed, but it's still there until a Speech Therapist says there is no risk of  her choking.   At the moment, Liz takes a large intake of breath and then speaks as she exhales.  It all comes out in one breath.  The rest of us listen intently.  Sometimes we go back to the old method, but there a sense that like the advent of a new technology, the past technology is obsolete and we are onto the new.

Liz continues to be in good spirits. She still has neurological pain in her left leg. This morning, her nurse Catrina, took her for a spin in the wheelchair out of the main entrance and about 3/4 of a kilometer (1/2 mile) round the periphery of the hospital. The morning was beautiful with a clear blue sky. We saw Liz with a green leaf in her hand - evidence that she has been out.

In the evening Louise, Naomi and Rebekah visited.

Tomorrow Liz might move to the Brain Injury Unit (a rehab centre within the General Hospital) with its new visiting times of 12-2 and 4-8.Here is a break down of views on how 

Liz is doing from around the world.

PS - 

A record of page views so far.

United Kingdom 22169

United States 624

India 613

Australia 487

Canada 345

Czechia 214

New Zealand 119

Ireland 112

France 109

Turkey 105

Message Twenty Eight

We get the impression that Elizabeth is going a little bit 'stir crazy' on the Critical Care Unit.  Not a surprise.  She has been laughing at her situation quite a bit.  It is likely she will be moved to the Brain Injury Unit on Monday, which will be great, as it is designed more with young people in mind.  There would be a programme of activities for her to do.

The reason for the move is because she has been breathing for herself now for 24 hours.  If she can continue this for another 24, it will be felt that she is safe to move.  The unit is at the other end of the hospital, down a few miles of corridors.

Cards in new location

Message Twenty Seven

When we found Liz today she was breathing without support which she has done now for the whole afternoon.  Liz's physios E and J worked her hard.  With plenty of support around her, they got her to sit on the edge of her bed. Jacob got her to reach out with her right arm, and lift up her right leg.  I liked the way he gave her left side exactly the same priority, even though it didn't move.  It's not forgotten.  Margaret noted that Liz said that her left leg has more feeling in it now.  Liz also reports that her sense of smell has returned.

Asli and Nimra, Leicester friends, called in and got to see Liz doing her physio.  Jatinder (who was once Elizabeth's primary school headteacher) also called in.  Liz has been experimenting with her voice.  Because of the tracchy and chest infection, it's not intelligible at the moment.  Jatinder was telling Josie, Liz's nurse, how Liz has a fine singing voice.   Liz then gave us a demonstration which sounded very much like a fog horn.  We laughed together, but tears were there too.

Margaret's cousin Dave, and family, Fran, James, Sophie visited after school.  In the evening Liz's nurse overnight, Sana, noted that she is only one year older than her patient.  Liz continues to keep her spirits up, despite everything.

Message Twenty Six

My mother's friend Alison, a nurse, says that the first 80 days are key for predicting recovering from a stroke.  This is 'Message 26', so there is quite a long way to go. We note that most people who recover from a stroke are not 22 and we feel Liz is not constrained by the law of averages. She has her creator with her, and we all believe she has been preserved for a reason.  Not sure what it will be -  that will unfold.

It struck me recently that every muscle in Elizabeth's body, controlled by volition, has been affected by this haemorrhage.  Her heart continues to beat strongly.  Today she is able to point with more precision, and we (the interpreters) are doing a better job at working out what letters are being chosen on the letter chart.

Marje and Brian, our friends and retired pastors, visited us today.  They have known Liz every step of the way.  Liz had her second trip outside into the fresh air.  This time it was without any breathing apparatus.  The next visitor was Josh, another church pastor, (except we have known him every step of the way).  Josh caused a mini sensation by bringing his guitar onto Critical Care.  He and Jo sang a song together, with Liz mouthing the words.  There were many heads turning.  Liz's bit of the ward had only one other patient on it so I am confident that they were not responsible for any heart attacks.  Jo heard one nurse call over to another group in a horse whisper "they're Christians".

Liz is being cared for by S tonight.  S is a good friend of F, one of Liz's nurses in Sheffield.  Word has got back to Sheffield to say how well Liz has been doing.

Message Twenty Five

It's been a very busy day for Elizabeth. It started with Liz sitting on the edge of her bed (supported by her physios, nurses and OTs).  Her feet were on the floor.  She then had two hours breathing on her own.  She had another two hours later on this evening.

My mother visited by train.  She was able to see Elizabeth sitting in a chair with her head held high.
We heard that in the night Elizabeth's cough had been so strong her tracheostomy tube had dislodged. (Elizabeth spelled out 'Portex', for those who know about these things.) This brought the Sheffield vs Leicester rivalry to play.  The Sheffield tracchy is made by a different company to the one used by Leicester (superior of course).  So it was a relief for the doctors to make Elizabeth 100% Leicester compliant. 

Liz was pleased to see Asli again, and Tejal, and also Benj and his dad Charlie.

We said good bye to Liz's student nurse G who has spent a few days caring for Liz.  Liz completed G's patient feedback form for her placement.  She thought G was great.  Jo, Liz's nurse, subtly persuaded us to leave early because she could see that Liz was getting tired.  She has had a good day.  We learnt that the infections are all felt to be benign, for which we are thankful.

Message Twenty Four

Elizabeth spent two 40 minute sessions breathing by herself today.  She was calm and took it in her stride.  Auntie Ruth visited from Bedford.  She brought a plastic plant for Liz's room.  Liz used to have lots of house plants in Sheffield so this was an acknowledgement that she is now in a plant free environment.

In the afternoon, Liz's mood dropped noticeably.  She is still having to deal with a hacking cough, and she struggled with her energy levels .   She also went off for another CT scan, the result of which which was reassuring. The brain injury is healing, and there have been no new bleeds. Liz has been having bad headaches, and this has stirred up memories of the day of the haemorrhage. We are trusting that these headaches are not sinister.

Liz has really enjoyed the company of her nurses, who dance and sing with her.  She was far more settled when we left her this evening, and we are looking forward to better days ahead.

Message Twenty Three

It's very good of you keep reading because we feel that we are here for the long haul.

While I think there are things to say, I'll keep going.

Elizabeth noted that we were 40 minutes late arriving (visiting starts at 1pm).  She told us off.  E, Liz's physio was with her when we arrived.  She deflated the tracheostomy cuff, and, for the first time in nearly a month, Liz was able to breathe through her nose.  Liz was also able to swallow naturally into her stomach.  It was amazing to see her take this step with real courage.  She said it was a bit like swimming underwater, trusting that you could come up for air.

For about ten to fifteen minutes Liz breathed on her own. The length of time will be extended, and eventually she will be able to go outside in a chair without tubes for about fifteen minutes.

Dr F and Dr B visited to look at the weeping sore round the peg feed. They gave her some antibiotics.  We trust that it will be a manageable bug that will be defeated.  Liz is putting up with this without complaining. On a different note, Liz told us she does not have any sense of smell as yet.

M, Elizabeth's nurse today, found a gospel channel on the radio and Liz has been singing along to some old favourites.  We can only think of Elizabeth singing with gusto, so miming to the radio is a new one for us.  M told us she did Elizabeth's first night shift in Leicester and, when she got home, saddened, she told her kids about her new patient.  Her eight year old went and got her picture Bible and read out the story of Daniel in the Lion's den.  Certainly, we have seen Elizabeth surrounded by dangers, and she is more than just surviving.

Liz was visited by Taiyeba and Komal, Leicester friends, which was great.  I joked that using the letter chart to communicate was a bit like one of group games Liz and her friends often play together.

As you know, Joanna is leading on managing the visiting schedule.  If you would like to visit, please contact her (or we can pass requests on to her).  Liz she said she is up for visitors,  assuming she is free from serious infection, and is keen for entertainment.  This is a wonderful change from last week and the week before when the key word was 'endurance'.

This is what Liz can see from her bed.

Liz's room is on the first floor, second window from the right.

Message Twenty Two

We felt encouraged today. It started with our church community surrounding us with love.  Barbara, one of our oldest members left a message on our answer machine which we treasured. I reflected that all our needs have been met, though we still need to rest.

As we walked into Liz's room, she held her right arm aloft.  That was not possible yesterday.  She was also able to point with her finger at the letter chart, and the conversation really got going. Liz told us about her experience on the day of the haemorrhage. She woke at 10am with a bad headache, feeling awful and tried to call out to her flatmate Adam.  Then at 11am she experienced the haemorrhage, was not able to speak and was vomiting.  She recalls Adam finding her and checking her breathing. Elizabeth remembered the Ambulance coming and taking her off to A & E.  We noted that Adam found her much sooner than we had first imagined.  He is a champion.

Today Liz was visited by our dear friends the Carrs.  Jill brought her a cat (one that is allowed in the ward.)  We put up most of Liz's cards in her room.  I'll show you a picture, another day when all of them are up.

Liz could move her head about.  G, her student nurse, gave her two beautiful french plaits.  Liz's chest was less troublesome, and she was much happier; more like her old self.  She told us about the nurses in Sheffield (all good news). We ended the day sitting with her as she was sleeping. 

Message Twenty One

Liz had a reasonably good night.  We joined her after lunch.  I sensed that she is feeling increasingly frustrated with her situation.  She has been exercising a lot.  This involves pushing with her right leg, and lifting her right hand and arm up to touch her face.  It takes a considerable effort and is exhausting.

We saw Liz touching her left hand and trying to move it, but this was too difficult for her. Eventually,  she had to use the letter chart to tell us that her left hand was pushing down on the PEG feeding tube into her stomach, which was agony.  We felt so much for her - such a simple thing, but a big task to get us to understand what was right before our eyes. This feeding hole into her stomach has become red and sore.  It is not at all uncommon for this to happen, but it is vital that it is not infected with any hospital acquired bugs.

Liz has had lots of special things made for her.  Her sixth-form friend Miriam, and James visited.  Miriam has been writing some reflections for her.  As a Creative Writing Masters student, these are beautifully written, with just the right amount of emotion and hope.

Anny, her friend from Sheffield sent Elizabeth a recording of her singing one of Elizabeth's own songs.  Liz's church has a great song writing community.  I attach a link to one that seems appropriate for the moment.  (Click on this link to hear Liz singing Elizabeth's Song)

Celia, one of Liz's flat mates from last year, composed and played an inspiring piece of harp music for her.  A number of people have painted beautiful pieces of art.  Elizabeth has been given many wonderful cards.

Message Twenty

What a day! Elizabeth got through the night well, and felt positive when we saw her in the morning.  We were informed that Leicester General Hospital (about 1.4 miles away from our home) had a bed for her, and Elizabeth was due to travel to Leicester that afternoon.  Granny had just arrived in Sheffield by train.  We had to apologise to two of Liz's student friends who had just arrived to visit.

While we were in the hospital cafe having lunch, the father of a Sheffield University Masters student two beds down from Liz told us his daughter had not survived the night.  This was devastating news.  Please pray for this family that they find a way to keep going. We continue to pray for the family of Max, in the neighbouring bed to Elizabeth, who remains in a coma.

Elizabeth told us she was very uncomfortable on her journey in the ambulance to Leicester.  She had been sedated, but it hadn't helped. 

The Leicester General Hospital could not be more different from the Royal Hallamshire as, instead of lifts, we now have long corridors.  Liz has her own room where she got a great welcome from the nurses - A, originally form South Africa, and E, originally from Kenya.

Elizabeth did lots of muscle exercises on her right leg with me. She also raised her hand to touch her face a number of times.  Her mood is definitely better, and she has more motivation to be active.

We are communicating together as a team.  I call out the letters, Jo looks to Liz for a nod, and Margaret writes down the unfolding words.  It's like cracking Morse Code.  Tonight she even reminded us that she loves us.

We feel your love too, so it's a love fest.

Elizabeth's new address is :-  Intensive Care Unit, Leicester General Hospital, Gwendoline Road Leicester.  LE5 4PW.   If you would like to book a visit, please contact Joanna.

A typical view from inside Leicester General Hospital

Message Nineteen

Today we spoke to the parents of the patient in the bed next to Elizabeth.  This lad is 21 and had a brain haemorrhage at work a week ago. After brain surgery, he is still in a coma.  We pray for his parents and his many visitors.  His situation looks worse than Elizabeth's. 

Elizabeth had speech therapy with S today.  It was very interesting to watch.  First, S massaged Elizabeth's face to desensitise her to touch.  Then she massaged her cheeks.  She then got Elizabeth to move her tongue around her mouth, and to touch her own face.  We learnt how this is important, so that Elizabeth is giving her body bio-feedback and starting to make new neural connections. S could feel Elizabeth's swallow was developing well.  Elizabeth got the idea and spent the rest of the day experimenting.  We also used the letter chart.  She was able to tell us more about the nights when we are not around.  It was heartbreaking to hear that she has been experiencing terrifying vivid hallucinations in her dreams.  She knew that they were not real, but said she was very scared.  Elizabeth asked you to pray that she will be free from this horrible experience.

We saw Anny again this morning which was lovely, and Liz did the usual physio, going on the 'tilt table', to experience what it is like to be vertical. Eliz continues to make progress in holding her supported head when seated.  She has been feeling very thirsty, which is a problem people face if they are tube fed.  They don't feel the benefit of a drink straight into their stomach.

Andrew and Margaret's good friend Dave came over from Grassington, and we went out to lunch together.

We ended the evening by joining our host, and now friend, Helen, at the local pub in Loxley.

Message Eighteen

What a beautiful day!  A, Elizabeth's nurse, decided that we should all go outside.  So a small team assembled:  the technician, to make sure the portable trachee was working safely;  a nurse to push Liz's wheelchair, and A with the emergency kit just in case anything went wrong.  Margaret, Joanna and I were there in attendance.  I thought of a great royal procession.  It all went very well.  Elizabeth has not seen beyond the back wall of the ward, and now she has been down eleven levels and out of the front door.  We were there for about fifteen minutes before we headed back upstairs, and to the comfort of bed.

Rachel and Tash called in.  Tash returns to Honduras soon.  Asli and Hana called in again.  They played a party game with Liz.

A Speech and Language Therapist had a meeting with Liz today.  She gave Liz an alphabet chart which we all learned to use.  It came in handy later to get the fan blowing in the right direction, and to ask the nurse to put water on Liz's lips to help her feel less thirsty.

Liz has worked hard at getting her neck to strengthen.  She reports greater feeling in her left side, but no movement as yet.  She is making lots of facial expressions, and is exercising her mouth to be ready to vocalise when she can breathe independently.

Tomorrow we move back up to Sheffield to stay until Elizabeth gets her transfer which will hopefully be at the start of next week.

Elizabeth leaves the hospital for the first time.

Message Seventeen

Just a quick message to say thank you to Liz's friends at The Well Church who had a special event praying and fasting for Liz.  Also Asli and Hana (old - well young - Leicester friends) who visited despite train chaos. 

It was upsetting to find Liz weeping silently when we arrived in the morning.  She was so stiff and uncomfortable.  We set to work massaging her legs.  It was interesting to note that it was her left leg that was in the most pain, which perhaps indicates the numbness is subsiding.  Her nurses Helen and Alistair then put Elizabeth's bed into the alarmingly named 'cardiac' position, and she felt better.  Joanna read to us, and we played Elizabeth some more music.  We all noted that Liz's facial expressions are returning gradually.

The move to Leicester is not going to be for 3 to 4 days we're told, which means definitely not yet, and after that there's no guarantee.

Our host family is able to let us use their house, so tomorrow we will be 'Yorkshire' again.

Message Sixteen

We were all encouraged today, and felt uplifted.  It started with our GP accepting Liz back on her books, which means it's much easier for her to move to Leicester.  Then Liz had the minor op to fit the feed tube into her stomach which went well.  When she was placed in the chair today she looked far more comfortable than before, and was able to hold her head up better.  She has also begun to nod her head, aiding communication.  She had some wonderful visitors: Evie; Elise; Tash and Emily.

Margaret and I emptied Elizabeth's student room, and enjoyed a delicious lunch provided by Adam, her house mate.  It would be wonderful if Liz is able to use the room again in the future, but we will see.

We have also appreciated meeting some of the night staff recently. They occasionally do day shifts, and we met F yesterday.  She told us that she sang the rosary to Elizabeth in the middle of the night.  She is a Christian (Catholic) originally from Kerala, India.  We were able to agree that the best place for Indian shopping and food in the UK (apart from London) is Leicester.

At the end of the day we were able to watch another video from Susie of children in Mizoram singing a song in English which Elizabeth had translated.  We are all enjoying our daily routines of music and story reading.

PS - Tomorrow Elizabeth's church community in Sheffield called 'The Well' are holding a day of prayer and fasting for Elizabeth.  We will join them too (just finished the meals we found in our fridge when we got home, and the cakes and basket of fruit will keep).

Message Fifteen

I think we all felt happier and more positive today than yesterday.  Joanna, Margaret and Andrew went for an early morning walk in the Peaks near Bradfield.  It was exhilarating, with views over to Stanage Edge on the one side, and on the other, Sheffield, which for once looked flat.

We found Liz was in a chair again, continuing to practice balancing her head.  Together, we listened to a recording of a moving bit of singing by a  Mizo choir sent by Susie.  Elizabeth did well, but was relieved to be lifted back into bed.  Her chest is improving.  Tomorrow, she will have her feeding tube fitted straight into her stomach (called a PEG).  This will free up her throat and reduce the risk of infection. 

At lunch time, after a pie in a pub, we went to Weston Park where a Circus event was going on.  Margaret went into the museum searching for coffee.  She came out into the park only to discover that Andrew and Joanna had run off and joined the circus.   She found them dressed in circus attire waving to her from a caravan.  This turned out to be a light-hearted, minor diversion, and we were soon back in the real world on Level K with Elizabeth being entertained by Joanna's wonderful reading.

Liz was visited today by Adam, Tash and Anny.  I think she appreciated their visit, but the last time she was not able to say one word for over two weeks was when she was a very young child.

Message Fourteen

This evening we had to tear ourselves away from Elizabeth.  It was not easy.  She looked so unwell and unhappy.  Joanna, Margaret and I stopped in the chapel on the way out.  It is a beautiful place of calm in an otherwise functional hospital.  We saw the prayer written by a kind friend for us in a book lying on a table.  We sensed  that Elizabeth's situation continues to be very precarious.  We know only one thing, that Jesus will never leave her, whatever happens.  Liz knows that.

Elizabeth's medical report continues to be fine.  She does not have a temperature. 

Today, Joanna read our new book to us.  She had to speak loudly because there was a right to-do going on in the next bed (behind a curtain).  Some poor soul was trying to pull her tubes out and her alarms were going off all the time. 

Tash, Cameron and Rich, Liz's old flatmates, visited this afternoon.  I felt that Liz really appreciated their visit.  They remembered the good times they had had together.   It was lovely to hear how they felt that Elizabeth provided the glue that kept them together.

We had lunch with our friend Mary and her girls in a Vietnamese cafe oft frequented by Liz and her friends.   I would love to return with Liz one day.

It was also lovely that a member of Elizabeth's church called in to pray with her.  We believe in prayer, and I've had a lot of thoughts on what this is about.  But it's not for this blog. 

Message Thirteen

It's two weeks now, but the time seems to have flown by.  I'm not sure whether Elizabeth would agree.  Today she sat in a chair again, and it looked a bit more upright than last time.  This forced her to hold some of the weight of her head, which she did for a couple of hours. It seemed like agony, but she did it. 

We had a long discussion with a senior nurse, P, about Elizabeth's move back to Leicester.  We agreed that she would probably choose to live in Sheffield, but in reality, we need to be part of her care plan.

P also spoke frankly about his experience of recovery.  Whereas all the professionals are telling us anything can happen, he noted that we should prepare ourselves for how Elizabeth might have long term disabilities, and described how these might be managed.  Apparently Liz could be moved to Leicester with 24 hours notice.

My aunt and uncle visited Liz this morning.  Unfortunately Liz was not really receptive, because she was so uncomfortable.  We went out to lunch together and walked around the park.  We are getting to be able to show off our new city (bearing in mind that we are on 24 hour notice to leave).

In the afternoon, we had a visit from Joanna's Godfather Tom (who happens to also to be a consultant neurologist).  He brought a book called 'The Explorer' by Kathrine Rundell, which we thought we would read together.  Elizabeth squeezed my hand in consent.  So, after two weeks it looks like we have a plan about how to fill the long hours, music and reading.  Now that's original.

Message Twelve

So is Elizabeth making progress?  Elizabeth is having to deal with a second sore throat and temperature.  This is very painful for her, even with paracetamol.  It takes up all her energy.  We know that when she gets over this, she will be more able to work on her recovery.  She is making progress, but it is little things.  Every day her ventilator is turned down a bit, and Elizabeth is doing more and more of her own breathing.  The doctors and nurses say she is doing well.  Today she had no cannulas at all in her body.

Before we arrived at the hospital today, the physios brought in a 'tilt table'.  This is a board that allowed Elizabeth to experience the sensation of being upright, and to take some of her body weight.  We did not see it in action, but apparently she was briefly vertical again.

We have a discussion tomorrow with a nurse about the plan for Elizabeth to be moved to Leicester.

I was good to see Anna again before she returns to Senegal as part of her languages degree.

We continue to pray together with our four hands linked.  Interestingly, when we asked what we could do to help Elizabeth, our nurse B, told us to have 'up beat' conversations and pray.

We are aware of so many people praying for us.  Even people who do not normally pray, and don't really believe.  Both Margaret and I have experienced a sense that something good is going to come out of this which we believe is from God.  It's the sort of experience that is difficult to shake off.  It's much easier to think of it as 'wishful thinking', but so far the feeling is sticking around.

Message Eleven

How about the rest of the team?  (That is us, and I guess it also includes you.)

Elizabeth is not really able to have much influence over what we say about her.  We have told her that we are keeping in touch with you this way.  When we think about our needs, it can be more difficult to say.

We all agree we are exhausted, and can easily get exasperated.  We are having to deal with the uncertainty of day to day, and what might be happening over the next weeks and months.  Perhaps the tiredness helps because it encourages us just to fix on the day ahead, and what we are having for tea.

Liz had a spell of a couple of hours in a very supported wheel chair today.  This was to help her chest, muscle and body tone, but it was quite a strain on her system, and her right leg suffered a lot of tremors.  They did stop when I held her foot, so I held her foot for a few hours.  We had to ask for her to be lifted back into bed because it was a real endurance test.

Elizabeth's school/uni friend Anna came to see her in the afternoon.  Elizabeth is not really able to interact because she is so uncomfortable, she is largely focusing on getting by, and can't manage conversation with yes/no which she was doing before.

We talked with N her nurse for the day about finding something to play music to Liz.  She had another tough day.  But she did sit in a supported chair.

Message Ten

Today started pretty badly, but by the end I think we all felt more peaceful.  Over night there were concerns Liz had had a seizure.  She was given a EEG which came back negative (negative is good).  Also a CT scan showed there were no signs of any further bleeding in her brain.  Poor Elizabeth also felt that she had lost the use of her right leg.  What's going on?  This is crazy.

Adam and Fran called in and we went off to a cafe for a rest.  When we got back we saw the doctors on a ward round.  J, the anesthetist, asked if we had any questions.  I said we were distressed that Elizabeth seemed to have lost feeling in her right leg.  Liz, eyes closed, started vigorously wiggling her toes.  All the junior doctors breathed a sign of relief.  I had a big smile.

I have discovered that we are not alone. So many of you are carrying heart aches, and burdens for loved ones.  You have been doing so for years.  My eyes have been opened.  Some of you have lost children and family members in tragic circumstances.

We will get though this. We do not know what the rollercoaster ahead is like.  I am reminded of going to Legoland with by nephew Emre when he was young.  We went on a ride together.  At first it travelled gently round a display of Lego figures.  Then the big dipper started.  Emre and I clung to each other.  "This is the bit I don't like", he said. 

Today I felt that Elizabeth has better control over her facial muscles.  She can hold her lips together.   Her eyes look as if they are co-ordinating better with each other.  She has also received some lovely cards and gifts, each one thoughtfully and lovingly chosen or made.

Message Nine

We have been concerned for the health of our hospital.  I helped Liz's nurse H fill out an incident form when a heavy roller fell from the lift door (recorded as a near miss).  This is a 16 storey hospital and the lifts are essential.  Today for a time, only one lift was working.  A few days ago we were amazed to see the lift doors open with the lift half way up to the ceiling.  A muscle man walked over and lifted down an extremely fragile elderly lady.  It was bizarre.  We noticed that nearly all the staff walk up the stairs, and we have started to join them. Level K = 11 flights of stairs.  A sign says 345 accents equals Ben Nevis and 1540 equals Everest.

Elizabeth saw her very good friend Anna, and Joe today.  She continues to be understandably, very despondent. We realise that we need to pace ourselves and get into a healthy routine of taking breaks.  Joanna is particularly exhausted.  We discussed with the staff about the plan for Liz to move to Leicester.  Also there is talk of her having a PEG feed, which means food going straight into her stomach, rather than through her nose.  This illustrates how serious her disability is at the moment.  We pray that she, that is we, has/have the strength to cope with the long hours that appear to be ahead. Margaret are I are so grateful that both of our work situations are 100% with us.  We could not be better supported both in the hospital, and Sheffield as a whole.