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.