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.

Message Forty Five

I estimated that Elizabeth's friends travelled over a total of 540 miles (one way) to come to Leicester to visit her this weekend.  The hospital is normally so quiet at the weekends, but the NRU was buzzing.  Liz was delighted to see you all.

Today, with the warmth and blue skies, we were able to walk round the whole hospital with an old (young) school friend Susanna, who had come from her uni in Falmouth.  Liz has been able to demonstrate her latest gymnastic feat.  With her feet pinned down, she can do a sit-up.  Anny drove from Sheffield telling us that it was the first time she had used a motorway.

We are getting used to the new regime in NRU (Ward 2).  The key is to be persistent and patient at the same time.  The nurses have more patients to see to, and often the buzzer (both at the main door and bedside), can take a while to be answered.

In the evening we sang hymns and songs together.  Elizabeth said she had already sung one of the songs Joanna had chosen.  She described the church service she held by herself this morning, complete with songs, prayers and sermon. (Actually I'm not sure if it extended to a sermon!)

Elizabeth's new view is worthy of a Turner Prize in Art.

Welsh postcards

Message Forty Four

Today the kind nurses of the Brain Injury Unit gave Elizabeth a great send off.  They made her a guard of honour with an arch of arms, and clapped and cheered her as she left the ward, pushed in her wheelchair by James, our friend from Derby.  He came to visit her today, not knowing that he had such a significant role to play.

She travelled the short journey down a long corridor to Ward 2, the Neuro Rehab Unit (NRU).  She has a small en-suite room with her old familiar bed that has travelled with her from Intensive Care.

Liz will miss her friends on BIU, and will need to return to see how the raffle sales are going.  A few days ago she was with Joe selling 'guesses of the name of the dog' in the restaurant.

Liz and James played Bananagrams.  Charlie and Jill came to see her in her new room.  I spent ages putting up her collection of over 100 cards and letters.

Liz continues to be in fine spirits and, if you ask her nicely, will demonstrate twitches in her left hand.

Liz's journey through the General

Message Forty Three

Elizabeth vs OT's at Connect4.  

OT's win. 

Liz's friend Karen, a professional Physio, gave her the game of  'Connect 4' knowing that this is a key challenge in the neuro wards.  The odds were stacked up against Liz.  The OTs worked together as a team and they have had extensive training. 

Elizabeth's Neurologist also told Liz that he thinks she experienced a cavernoma (see https://www.nhs.uk/conditions/cavernoma/).  The MRI scan apparently has been very difficult to interpret because there is still a cloud of bruising.  Liz will have another MRI in a few months time.

Liz continues to work hard at her physio and speech therapy.  She had ten spoonfuls of apple puree today which she enjoyed.  She continues only to be able to eat with professional supervision.  Otherwise it's the bag of 'Nutrision 2.0' which bypasses her taste buds. (Our friend Charlie tells us he tasted this stuff as a nursing student.  He recalls it as sweet and bland.)

We all continue to be encouraged seeing the strength creeping down Elizabeth's left arm.  Everyday we see progress.

Joanna has been struggling with a long standing ear problem and also a sore throat.  She has had some time off from visiting.  Please pray that she gets some good rest and that her health is restored.

The famous game of dexterity

Message Forty Two

At the entrance to the ward is a large display of items in the Christmas Raffle.  When we arrived Liz was needing to use the bedpan.  We gave her space, and only ventured into her room when H, her nurse, came out carrying a brimming bowl.  We heard Liz call out after her, "Put it in the raffle."

We have already done our duty by guessing the name of the toy dog.  The names we chose were any that reminded us of Liz's friends and family (Theo, Susie, Maya, Chloe, Star, Joey, Mini (Minal)... you get the idea.

Today Liz went to a Communications Workshop.  It was a far cry from an English seminar at Sheffield.  She continues to tell me that she is encouraged though, and not dismayed. She is counting her blessings and she is occupying her mind in the small hours of the night by naming all the fixtures on the ceiling.

I agreed with her that I could detect some strength in muscles in the top of her left arm, but we have yet to see if they are going to actually help by moving it.  The move to Rehab is now scheduled for some time next week.

Hlutei's picture of Liz.
(Liz liked the purple hair.)

Message Forty One

Happy Diwali from Leicester!

46 days have passed since the haemorrhage.  Today, with four OT's around her supporting her weight, Liz stood on her feet for a few seconds.  She also rolled over onto her front on the bed by herself. 

Elizabeth, who famously said 'dog' before 'dad' as a child, was visited by a black labrador, who, much to Liz's delight, jumped on her bed and licked her face.  We are not worrying about infection control so much these days as Liz points out  "I'm not ill.  I'm just having to deal with a physical disability."

Today there was excitement on the ward as Elizabeth received a large present from Charlotte, her friend from English at Sheffield.  The staff agreed Liz could keep the plant in her room, which is normally forbidden.  (After the dog, there can be no argument.)

Also a large envelope filled with letters from Mizoram, India, arrived.  The beautiful picture from Hlutei will be displayed on the wall (after I have ironed it flat). 

Owl is a gift from Charlotte

Message Forty

So what's next?  Liz said today that her consultant suggested that she has her eyes tested.  She may be provided with correcting glasses to stop double vision at some stage.  Liz has been doing lots of bed top exercises.  She can arch her back and lift her bottom off the bed.  Today she manoeuvred her wheelchair around the room with her one good arm, by tugging on the bed frame.

C, the Speech Therapist, visited with a small gift.  It was a ball which Liz held under her chin to strengthen her neck muscles.  They discussed why Liz continues to have what she calls 'a funny voice'.  It's a combination of bruising to Liz' vocal cords from the ventilator (especially the one from the early days), weak muscles and the stroke.  Liz continues to be concerned that I 'm not pronouncing C's name correctly.  I think Liz is lining up a therapy session for me at some point.

Rashem and Neeta visited Liz. They are people who have known and loved Liz since she was a baby.  Rashem told Elizabeth that she has woken up in a few times the night feeling that she should pray for her.  Liz found this very touching.

Liz normally ends our visits at 8:00pm with a prayer, "Dear God, thank you for everything.  Amen."  Well that just about wraps it up.

Message Thirty Nine

I talked with Liz today about whether she would like to take over informing you about what's going on.  We discussed the levels of censoring that are necessary.  I have been writing the messages.  Margaret and Joanna read it.  They polish it and correct the grammar.   Liz acknowledged that she is pretty free and easy with information about her situation (like her father).  I have described her as lying in 'the bed of truth'.  Liz has been able to say whatever she wants to say.  She describes things just as they are.  We agreed to continue working as a team.

Liz says she is positive, but aware of the challenges that are now ahead of her.  It's like she has slid down a high mountainside to the bottom and is crawling up it again. Liz has been experimenting with her hand writing.  It's becoming more legible, but it's still an effort for her.  She feels more comfortable in her wheelchair.  The Speech Therapist fed her 'peach' yogurt which went well.  We have never been so aware of the power and importance of a swift swallow.

My cousin Theo flew over from Brno for the weekend.  He knows Liz well and lived with us when  Liz was a young child.  Yewande visited again in her school half term (the Birmingham half term holiday is very late).  Hana and her sister Zarina came with a wonderful card that has been sent to all ten of her close school friends around the country with wonderful messages and even some poetry. Liz noted with them how important it has been for her to be able to connect with her life before the brain haemorrhage.

Next week Elizabeth will be moved to Ward 2 - Neuro Rehab.  It's down another long corridor decorated with pictures of the sky.

(Guest Editor - Theo)