Message Sixty Eight

Our Scottish readers would have noted that I neglected to say that last Friday was Burns' Night.  This featured in the Speech Therapy Communications Group quiz. Elizabeth said, not surprisingly, it came to her to explain what Burns' Night is, and indeed who Robbie Burns  was, and what he wrote.  An English degree comes in handy at all times.

Elizabeth continues to make steady progress.  She is doing her transfers quickly, and it's a relief to be able to get about the ward in her wheelchair.  Liz continues to be very encouraged by her visitors, who come even when not feeling great themselves, or making round trips from Sheffield.

We have been discussing the options for next year, with Sheffield University explaining what disabled accommodation they have.  We figure that it is best to make plans for the most difficult out-come in September 2019.

Our discussions have continued about what all this brain hemorrhage and recovery might be all about.  Is it just a bad thing?  Elizabeth says whatever it is, it is an experience, and she sees that along with the other 15 people in her ward, she is learning a lot about what is important in life.  For her she is also learning about trusting in God.   I said "so you'd say it's as sensible to say 'heal me instantly God from this hemorrhage' as it might be to say 'let me have my degree now', without doing the concomitant work."  She said- "yes, something like that."

Message Sixty Seven

Liz felt that I left things hanging a bit with the talk of botox.  She has had the treatment, but it takes effect over seven days or so.  Today Liz tried out the treadmill in the gym.  She was first strapped into a harness to ensure that she could not fall.  It reminded her of being in a baby bouncer.  Then she was able to walk with the machine holding her weight.  Her physio had to cover over the heart monitor after Liz cottoned on that she might be in a video game with a limited number of lives.  "look I am on my last life- dangerous."  Joanna pointed out that we are all on our last life.

We are affected by the lives of the other people around Elizabeth.  One fellow patient will soon be going home and we pray that he will be able to walk out when he leaves.  He still has a lot of neurological pain, and Liz is aware it feels as if he still has a long way to go.  We have been discussing what the point of all this brain haemorrhage stuff is.  Liz said that whatever it is for, she is okay with it. She is willing to discover.

Today Elizabeth was visited by a therapy dog.  She said that it was a good dog.  It doesn't mind having a stroke.

Jo had a day away with her friend at Loughborough University this week which she really enjoyed.  She is working tomorrow in our local Deli.

Message Sixty Six

I visited my mother this weekend.  Elizabeth suggested I should get some fresh air away from the hospital.  It's good to take your daughter's advice.

Liz said she has had moments of acute frustration.  It's very difficult to find solitude on a busy ward.  She went to the gym to get away from it all and let it out.  Four loving nurses chased after her to check she was ok.  They were understanding and know that there are things that just have to be born alone.

Elizabeth continues to be strong. Our Indonesian friends visited.  We feel privileged to have such an international family. 

Liz showed me her 'banana boarding' this evening.  This is moving from one chair to another chair, or her bed, with the aid of a strong curved piece of plastic, a 'boarding ramp'.  It was quick and slick.  Moving from hoist to banana board is like the technological shift from steam power to electricity.

Tomorrow, as Elizabeth got her OT to put on her wall chart, is 'stabby stabby' (as opposed to 'splish splash', which is hydrotherapy).  Liz will have a course of botox in her left arm to relax the tension in the muscles and allow the possibility for other movements to come to the fore.  Today, she showed me how the left sided movement is progressing with what looked distinctly like a naval salute.  Joanna noted this looked more appropriate than  'Sieg Heil'.

Message Sixty Five

Today is the day I have been waiting for.  I knew it would come soon, but it came quickly, and as a surprise.  Elizabeth announced that she can now 'banana board' out of bed and no longer needs the hoist.  As my brother says, "we are learning a lot about hospital equipment."

Also Liz can sit in an ordinary chair next to her bed, and we'll be trained to help her get into a car.

Her sling now gets slung.  Infection control says that slings can not be cleaned or shared, so it goes in the bin.

We were remembering all the brave people who have tried Liz's electrical simulator on their arm.  Jonathan, Matthew, Theo and me.  Liz has been given more muscle groups in the left shoulder to work on, at a higher discharge.  So there is a new challenge.  This time smoke comes out of the ears.

This evening we were still working on the return of the student loan.  We have got to the bit where we ring and they have to ask Elizabeth whether she gives permission for her dad to speak for her.  Liz said "hello", and burst out laughing.  I was very worried that the poor student loan guy would think this was some practical joke launched from a drunken pub.  He did seem very unsure whether this was really happening.  Every job has its curious moments.  Anyway, the vast sums of money in Elizabeth's bank account are all going back.  Good job there is not much to purchase in the hospital.

Anna visited all the way from Sheffield.  Liz has been comfortable reading a bit more.

This is not Elizabeth but it is a
hoist in action

One of Liz's bay-neighbours walked out today (that's the objective) and all the staff and patients gave her a great send off.  They all lined up  as a guard of honour and clapped.

Message Sixty Four

Elizabeth tells me I am obsessing, but there is something compelling about statistics (anyone?)

The stats so far.

143 different people have visited Liz in hospital - 35% have visited more than once.
27% visited in Sheffield and 17% have been to both hospitals.
1.86 new visitors visited per day in Sheffield as opposed to 0.74 per day in Leicester.
67% Female to 33% male visitors, 40% were students (or of student age).
15 were uni friends, and 16 were old school friends.

To me this illustrates how loved and cared for, Liz and our family have been, and there is no change in your support, love and prayers.  We are truly blessed.

Comparison of visitor numbers
in Sheffield and Leicester

Today Margaret and I found Liz in the staff office with Ghizlane, the deputy Sister, discussing something important (not sure what).  Liz continues to have more movement in her left side, but not enough yet to allow me to take her in our car to get measured up for a new wheelchair tomorrow.  She will go with Lindsay, her OT in a disabled taxi.  However, it won't be long before she is free to travel with us.

Liz's top tip for hospital living is to go for the Kosher meals (for those who can eat anything).  

She has been discussing her new sitcom based on the ward with staff.  Her role as 'eyes and ears' on bay 2 (Baywatch) has had consequences.  last night, she told me, she had a dream where the other elderly ladies in her ward got away in the night when she was asleep.  Stressful.

While Liz is improving, and her physio, OT and Speech Therapy is going so well, she is staying put.  

We have another care plan meeting at the end of next month.

Message Sixty Three

Today was quite a day.  It started with Elizabeth holding off from breakfast because having a camera pushed down your throat can make you feel sick.  The head of the endoscope has a light and some scissors.  The surgeon cut off the PEG in Liz's stomach and the tube came out.  Amazingly the stomach reacts immediately to block the hole and Liz has had no discomfort.   She was able to eat by lunchtime.  Last weekend Liz requested a meal from the kosher menu.  A little while later one of the kitchen staff visited her in a bit of a fluster and asked "Are you Jewish?"  Liz said no, but she fancied trying all the food on offer.  The cook confessed that there were no kosher meals, but they would get them for Monday.  Today Liz had baked cod, suitable for kosher and Jain diets.  African Caribbean is still her top recommendation so far.

This afternoon we had her second Care Plan meeting with her Nurse, OT, Physio and Speech Therapist.  It was exciting to reread the previous minutes from the 26th November and note what great strides Liz has made.  6 weeks ago she was eating pureed food and still using the PEG for water.  Today there are no restrictions on what she can eat from any part of the world.  Liz is close to being able to transfer off the bed into her chair with the banana board.  Then she will be able to travel in a car.  Next she will be able to come home for the weekend.

The therapists said that while what they can offer her is succeeding, it's best to stay in rehab.  The challenge is, as R said "Hope for the best, plan for the worst."  We have faith that Liz will fully recover from this, but we do not know how long it will take.  That is the test of faith.

 She will find out what Sheffield Uni has to offer for people who use wheelchairs, in case that might be needed.

Yesterday Liz saw her old primary school friend Miriam, who now lives in Australia.  They made so much noise they were asked to leave the bay.  In the evening she saw some old school friends who she hadn't seen for a couple of years.  She really enjoyed their company.

Liz suggested that I put this song she has written in the past on the blog for anyone who is interested.
https://soundcloud.com/starrmarked/happy-days-come-my-way?in=starrmarked/sets/songs-for-stay-home-sadness

Message Sixty Two

Elizabeth is now fully in charge of her visiting diary.  Please do contact her if you would like to visit (facebook is one way to do it).  Liz is aware that during the day she has quite a number of activities with the OTs, Physios and Speech Therapist.

Tomorrow is 'Splish, Splash'.  Wednesday is 'removal of the PEG', a minor operation and we trust, her last.  Also her Care Plan meeting (her second).

Today R her Physio said "Oh no, please don't tell your Dad, he'll put it in the Blog."  Am I getting a bad reputation?  Liz is aware of patient/staff confidentially.  So that's the extent of the story.

One of Liz's friends contacted her and said she was looking forward to seeing Liz to tell her gross stories about working at Primark.  Liz said "I'm looking forward to seeing you to tell you gross stories about poo."  Her friend said "Same thing- my stories are about poo too."

Her Physios said today that they love coming in on a Monday to see the new trick Liz has learnt over the weekend.  Today it was lifting her left hand from the wrist, just a bit.

My Mum, and my Godparents, Ian and Ellie visited for the afternoon.  Also Sophie (Liz's second cousin.)

As Liz pointed out, on New Years Eve she was in hospital for 100 days.  So it's 107 today.  I have counted that she has had 112 different visitors over this time too.

Message Sixty One

At the start of the New Year, I want to say thank you to you.  We have been so touched and blessed by the constant love and kindness you have shown each one of us.  So thank you. 

A typical day for Elizabeth:

"I slept well.  I woke at 6:00 when the nurses came to check me.  Then I dozed until my neighbour switched on the TV very loudly at 7:00.  It's the News and generally someone is making objectionable and upsetting comments about immigration."  Then breakfast - toast in bed - not a great combination, the crumbs go everywhere.  Washing might be a 'bed bath', or a shower, or 'washing and dressing' with the OTs.  This is classed as an activity because it can take two hours.  Basically it's Liz washing and dressing herself with a bit of help from her 'friends'. 

Then some 'physio', which, at the moment, is learning to stand up from the side of the bed.  Next week she will have her first visit to the hydrotherapy pool. 

Communication group covers fairly basic topics generally. The questions can get tough, but never hard enough to fox Liz.  (For example, "Who was the US president after George Washington?"  Every American first grader can tell you that*.)  I asked Liz what her speech therapist had said was the reason for her attending.  "To learn to speak loudly and clearly."  The group divided into a number of teams.  Liz named her team 'Baywatch' (hospital bay..?)  She said the men chose a very boring name (team men), similar to the unimaginative name given to the plastic cup snowman (snowy).

Liz is concerned that she may be becoming 'institutionalised'.  She noted that she has always been a part of an institution.  School, College, University, Jury service....now hospital.  What next?  Prison? 
I asked her what crime would get her there.  "Speed offences"...wheelchair speeding!

*https://en.wikipedia.org/wiki/List_of_Presidents_of_the_United_States

Message Sixty

With time off work today, I rang the student loan company to tell them that they need to reclaim Liz's student loan.  Sheffield Uni had informed them, but the money came anyway. 'Ring again tomorrow' was the message, it's 'Hogmanay here in Scotland'.  The loan company is based in Glasgow.

This morning we met with Liz's consultant.  She agreed that Liz doesn't need to go back to the eye specialist just yet.  The last experience didn't go well with the long wait for an ambulance.  It was agreed that it's really just a waiting game for the eye muscle to quieten down and stop the torsional (circular) motion in her left eye.  Sheffield had a 'look in' today as no one knew what sort of PEG had been fitted.  Liz will have an ultrasound scan to discover how to remove it.

Liz is now using a normal wheelchair and was able to show us some new movement in her left foot.  It's all very encouraging.

Liz's old school friends called round in the evening.   They had prepared a 'secret Santa' together.  They even provided Liz's contribution otherwise it might have been something from the hospital shop.