Message Fifty Two

Dad's log Starrdate: 10th December 2018  (80 days and counting)

Accident and Emergency/ Critical Care	Northern General Hospital, Sheffield	22nd September
Neuro Critical Care	Royal Hallamshire Hospital, Sheffield	23rd September
Intensive Care Unit	Leicester General Hospital	12th October
Brain Injury Unit	Leicester General Hospital	22nd October
Neuro Rehab Unit	Leicester General Hospital	15th November

When Elizabeth first arrived on NRU a kind housekeeper offered her a cup of tea.  She had to turn it down. Today she said yes, and had her first 'cuppa' in 80 days.  She also had a proper meal, Lamb Curry, complete with a chapati.  She continues to use the PEG because drinking water is still tricky.  I suggested that 'thickened' water looks like coconut milk, when an analogy with wallpaper paste was rejected.

Liz had an action packed weekend with 14 visitors (not including us).  She loved seeing you all.  She is also enjoying the therapy she is receiving; Speech therapy, OT and Physio.  Today she was sitting unsupported on the edge of the bed. She continues to love her nurses who are so kind to her.

Some of Liz's friends have invited her to join their student house next year.  Liz will need wisdom deciding whether to plan for student living in September.  It's a step of faith.  This decision will need to be made officially in February.

Look at the cards!

Message Fifty One

Liz has been enjoying her food.  It all looks quite strange after it's been through the blender.  Dal and rice seems the most normal, but the rice looks like very white mashed potato.  Quite a few people have had the honour of helping Liz to eat including Taiyeba today. Liz can feed herself, but a shaking right hand means a lot of it falls on her lap.

The physios also gave her a new toy.  It's a microstimulator.  She has two areas marked out on her left arm where the electric pads are placed.  Then at roughly 20 second intervals her muscles are stimulated and her left hand rises in a royal wave.  This helps to keep the muscles active as her brain unravels the amazing complex of nerves that all need reconnecting.  It reminds me of seeing an engineer working on a telecoms junction box in the street.

Liz had eleven visitors today which was really special.  Dorothy and Min came from Sheffield.  Anna's parents, Sara and Bill visited.  Both they and Dorothy had seen Liz at the beginning of this journey.  Their visit was so different today, with a sense of fun and hope on the ward. It was lovely also to see Phoebe, Elisheba's sister, who drove over to meet with Joanna.

Liz and I also visited the BIU today to see her old friends/nurses.  E had bought her a small gift, which was very touching.  Liz said how strange it is that some of these people feel like friends, but they are also professionals.

Liz's left hand rises straight up

Making sense of the neurons

Message Fifty

A new risk has entered our lives.  My kind mother bought Elizabeth 10 raffle tickets for the Neuro Rehab Christmas raffle.  The problem is that one of the prizes is a massive life size teddy bear.  We previously  acquired a stake in the Brain Injury raffle with a risk of a soppy soft toy dog.  This is more like Russian Roulette, than a Christmas raffle.

Today is Joanna's twentieth birthday.  Liz has been singing all day long.  I think she is enjoying the excuse to work on her voice.  Also today, for the first time since the 21st of September, Liz started eating pureed meals.  This evening her aunt Ruth fed her a chicken pie, carrots and mash.

Elizabeth gave Joanna a card game for her birthday called 'Cheating Moths'.  The strap line is 'where cheats prosper'.  It's not all innocents on the ward.

Cousin Sarah drove down from Durham, and Ruth came up from Bedford.  We had quite a party in NRU.  The other patients were patient when we played catch with Elizabeth's speech therapy ball.

Message Forty Nine

Liz has long hours on her own lying in bed.  She normally wakes when the bags of food run out at 4 am.  The machine beeps.  And then she snoozes on til 6am when she gets a wash from the night staff, just before they go off shift.  It's quite something to be still in bed, not able to do anything; just alone with your thoughts, until the action starts when a therapist arrives at 8:30am.  The nurses are lovely, but they have a lot to do.  Liz has coped amazingly well, but it has made me think.  She continues to feel fine, and is very positive. What she likes is to be in her wheelchair either in the day room, or by the nursing station.  Her eyesight is improving, and so is her handwriting.

Today we went to the restaurant with my mum.  In the afternoon Lala and Max visited.  Liz said Max won all the games of Harry Potter Top Trumps.


A very humbling show of solidarity and pray from around the world

Last day Contacts

United Kingdom	241
Honduras	41
Australia	19
Senegal	5
United States	5
Canada	4
Netherlands	3
Norway	3
Portugal	2
Belgium	1

Last month Contacts

United Kingdom	9058
Australia	297
United States	177
India	172
Honduras	134
Ireland	103
Canada	67
Portugal	60
Turkey	59
France	46

All Time Contacts

United Kingdom	37591
Australia	916
India	913
United States	901
Canada	468
Czechia	300
Ireland	279
Honduras	198
Turkey	195
Norway	163

Message Forty Eight

Today we had a big meeting in the day-room.  Liz's OT chaired the meeting.

• The Doctor said she would get the scans from Sheffield sent to Leicester for Liz to see.  She also hasn't seen her MRI scan yet.  
• Her Speech Therapist discussed diction and swallowing. It's still 'yogurt' morning, noon and night. We discussed the difference between water and custard.  Water can slip down into the lungs.  A small amount is fine, but not custard.  Liz is handling the custard ok though, so no drinking yet.
• Her Physio student discussed the gradual steps taking place every day (they have a good laugh together). This included a return to the 'tilt-table', last used in Sheffield, though it is now a much more stable experience of being vertical.
• The nurses were pleased with Liz.  She is healthy, and has not caught the flu. 
• The OT rounded off with a message to Liz to continue to believe in her left side. When she washes, her OT gets her left hand and lifts it to help her wash. She has never given up with any part of her body.
• The doctor thought she would be in hospital for another 3 to 4 months.  

It was a good meeting, but was quite hard for me to hear their dispassionate description of our experiences.  We think Liz has made amazing strides.   Here we were examining the long slow up hill path.  Elizabeth continues to be positive and up beat.  We smiled to ourselves when the OT said that she knew that Liz was religious and might need to go to church on Christmas Day.  Liz said being in hospital was fine.  She is going to the Chapel with the Baptist Chaplain on Sunday.  We might just join her on Christmas day.

The Niblocks visited Liz in the morning with a small gift from Rwanda.  We had a lovely time with Asli again in the evening.

Liz has been moved into a open women's ward with three other people.  That's her eighth move.  I figure that the evening injections and constant moves ensure that no one gets too settled down in hospital.   It's not home.

Message Forty Seven

Today is Sunday.  In his sermon, our pastor used Elizabeth as an example of someone who has a mature and secure relationship with her creator.  I do agree, and so does she.  Liz consistently tell us that she is 'fine' (her words).

On Friday Elizabeth had her Videofloroscopic swallow test.  (click for more information.)

C kindly rearranged other patients to be able to join K to undertake the test.  Liz was under strict instructions not to laugh. This was a challenge because Elizabeth usually has a good laugh with her speech therapists.  All went well.  Everything was set up.  C went behind a screen, and K got ready to spoon feed Liz water, followed by custard, then cake soaked in florescent dye.  K disappeared and reappeared wearing a lead lined khaki apron with 'Dr Ahmed' written in big letters across the front.  Bad move.  Liz couldn't stop laughing.  It looked like something out of a war she said.  I think all of us who work in institutions often forget that there are different worlds out there, and our world is actually quite absurd.

So the good news is that she did well in the test and is now able to eat cold chocolate custard, and fruit yogurts.  Today for lunch she ate two yogurts.  She was able to feed herself (well wrapped up in a plastic apron).

Liz suggested that anyone who uses spotify might like to listen to her gospel playlists 'Gospel Funk' and 'Jesus Jamz'.  She said she has been passing long hours listening on Asli's tablet (thank you Asli).  She also loved seeing Tejal on Saturday.

I can't resist my own playlist (sorry Liz) https://soundcloud.com/elizabeth-starr/mizoram

Message Forty Six

Liz slept well and was woken at 7am by the night staff to give her a wash. Liz likes the early start as  washes can go on to mid-day.  She met up with an OT to discuss how to fill her days.  She is not keen on TV, preferring conversation with people. This is an advantage of having a side room.  The main wards have wall-to-wall TV.    Reading continues to be a strain on her eyes, and she has never taken to talking books. What Liz really loves is her visitors.  She has also been able to chat with a number of fellow patients.  One was struck down on the same day as her whilst participating in a local park run.  Liz also fills her day with a mixture of Physio, talking with the nurses and watching netflix on Asli's tablet.  A visit from C, her Speech Therapist, is a highlight.  They laugh together a lot.  Tomorrow C will feed Liz yogurt in a scanner(!) to see how her swallowing is doing.

Today Elisheba visited (that's 'Elizabeth' in Hebrew.)  She gave Liz a book called 'Elizabeth is Missing.'  'Elizabeth' has been the word of the day.  Jo and Liz chatted to an OT about how suitable our house might be when Liz comes home.  Liz said she was quite happy to wash in a bucket in the kitchen, as she did in Mizoram.  I think she has forgotten in the heat of the NHS how cold it is getting these days.

Jo has gone away to stay with a friend for a few nights.  Margaret and I went out for an evening meal.