May 24th to 28th Progress

May 24th It was a beautiful day in New York today – warm sunshine, with a great sunset over the Hudson river. Tom was in the sun too, today. After an hour or so wondering whether it really was going to happen, Tom was lifted into a wheelchair (Ellen held his head) and was able to go outside and spend some time in the garden of the Centre. He also had eight hours off the ventilator, and macaroni cheese to eat. By the end of the day he was tired, and his heart was racing, but what a wonderful series of achievements! A big toast to those who have laid out the challenging milestones (goals?) for Tom’s recovery and rehabilitation, and to all who are helping him reach them, especially to Ellen and, of course, to Tom himself.
May 25th Marie, Fred and Jasper visited
May 26th Ellen, Jenny and her Tom were there in the morning: David came at about 13.00. Tom N was in bed but within an hour was dressed and winched into his wheelchair. For the next three hours or so he and David walked round the centre, sat in the garden (in the sun again) ate a BLT sandwich in Jimmy’s cafe, had a very productive physio session and then had another meal with jelly etc. David and Tom spoke with Ollie (who had done a DJ set last night to celebrate completing two of his four final exams) … David left Tom still off his ventilator (he plans 12 hours off today) and sitting in his chair…David then went to Oxford to find Polly who was celebrating with St Clare’s friends (graduation Ball last night). Late in the evening, back at the hospital, Tom was resting quietly – quite tired after more than 4 hours in the chair. He was still off the ventilator, with good blood oxygen levels and air entry – but hungry and keen to talk. David worked out how to make a high energy nightcap (made with skill). Ellen rang and spoke to David and Tom and then they chatted quietly into the night.
May 27th All day and all night off the ventilator. Wheelchair outing with David (in the rain, which was good but rather cold). Polly Ellen and David together in the evening. Ordering new laptop. New pictures….
May 28thDavid to centre early to say goodbye (then he and Polly go to Leamington to see Ollie)…Tom on excellent form….

Message from Ellen

Saturday May 19th:  David flew home to New York after he and Ollie came to see Tom in the morning.  Ollie stayed and sorted out the projector for the two of them and Raj and Erin to watch the Cup Final in Tom’s room.   During all this Tom was doing 25 minutes off the vent each hour.  Susie also came to see Tom in the evening so he had a lovely day and by the time I came to see him he was ready to sleep.

Sunday May 20th:  Tom has been enjoying eating little bits here and there.  Today he had some mash with gravy along with some delicious custard that we think tastes like clotted cream.  I have to test the food first of course  . 
:)  
Tom spoke to David, Josie and Lucas in New York.  Laura, Laura, Gary and steve came to visit Tom and when they left  Reuben and Yousef came.  Tom really enjoyed them visiting.  He is now sleeping from it being so busy the last two days and also doing 30 minutes off the vent every hour is very tiring.  Tomorrow will be an hour on and an hour off.   Tom loves being able to talk but he has to strain his neck muscles to make speech sounds and it can make his throat sore: he is resting it now by talking in whispers!. 

Progress May 13 – 19

Sunday May 13th:  David spent some hours with Tom and Ellen while in the UK en route from New York to Geneva (the World Health Assembly started on Monday May 14th). Tom was looking great: talking, able to sip fluids, and breathing on his own for regular periods each hour. The breathing part is hard work, and from time to time Tom’s airways get a bit bunged up. He is helped to do this work through the skills of the nursing and medical staff on St Andrew’s Ward, the physiotherapy team and the respiratory technicians. David busied himself removing a few tracks off Tom’s ipod, cleaning the “Heroes” DVD so that episodes 10 and 11 are viewable and obsessing about TV access. David told Tom about some of the reactions he is receiving to posts that he and Ellen put on the website. David spoke of his contacts with other people with serious injury to their spinal cord at the C4 C5 level: one person in particular (who works in a senior position in a premier US public health institution) has been kindly expaining how he has progressed following a swimming pool accident when he was 18. David then went on to see Polly who is much better – recovering well from her operation.

Wednesday may 16th:  David returned to meet with Ellen and Tom Wednesday evening after three days at the Assembly. (There is much focus on influenza pandemic readiness, sharing of virus samples and ways to ensure that poor communities will be able to benefit from vaccines effective against the yet-to-appear pandemic virus). Tom looked great, continuing to work hard at the breathing and – with the nurses and physios – at keeping his lungs clear. As well as Ellen (joined this week by Mandy), Susie and Polly have spent many hours with Tom: Tom Sheppard and Hugh Palmer visited, and loads of great letters and messages have arrived. An anonymous friend (though David thinks he can recognise the writing) sent an Arsenal programme with a signed message from Arsene Wenger. It looks as though there will be a TV in his room before the end of the week (in time for the cup final?). Tom Ernst, who David met in Geneva with Carole, Bob, Siobhan and Andrew, sent Fawlty Towers…

Thursday 17th, David went to Warwick to be with Ollie, then they travelled to the hospital together to visit Tom. They all worked together helping Ollie revise history for his finals which start on Monday.

Friday 18th May – we were together again.  Tom was explaining to us how he is handling his own feelings about what has happened and what he can expect to do in the future. Inspiring stuff for both Ollie and David. We were with Ellen and Polly, and Ellen’s mother Mandy, Susie and her father Michael.

Ollie and David went on Saturday May 19th: we watched Tom have a hair wash (pure pleasure as he loves having his head stroked).

Tom’s progress remains good – he is eating/drinking mashed potato, jelly, soup and yoghurt; he is off the ventilator of 15 minutes every hour, and having fewer problems with “plugging” – when the air entry to his lungs gets blocked with secretions”. David went back to New York on Saturday afternoon, taking pictures of Tom to show Lucas and Josie, and they were able to speak with him by phone Sunday morning (probably contributing to his sore throat).

Procrastinated post

The beginning of this entry isn’t completely up to date as we started writing it on Monday and it is now Thursday and a lot has happened since… It was great to have Gary, Laura and Raj over on Saturday seeing how life is going in London.  Laura gave me a nice selection of photos.  They understood everything I said even with out Ellen there to lip-read. 

Had some difficulties with breathing last night (Sunday), one of the associated problems of being on a ventilator.  The experienced nurses sorted me out brilliantly.  Apart from this and some throat and neck pain everything is going well. 

It’s an interesting experience going from a life where time seems so limited with exam pressures and deadlines to life where time seems insignificant.  Due to the lack of visual changes my world exists in my head.  For a brief moment yesterday when they were changing my mattress to an airbed I got wheeled out of my room for the first time.

 I have been sleeping fairly well going to bed around 11 and waking around 7 or 8.  The morning hours drag on and this morning (monday) I was listening to music to help the time pass.  The music was dad’s excellent selection of chill out music on my ipod.  One song that made me drift away was ‘Let you go’ by Aaron Tyler.  Not particularly enjoying the Sean Paul I’d prefer it off my ipod J 

I’m sure a lot of people have pieces of music that have a special effect on them.  Another for me is the original ‘Salt water’ by Chicaine.  It reminds me of Tom Shepherd and the good old times.   I hope Tom, John, Sue, Ben and Kate are all doing well.  I miss the visits to your warm household.  Also I miss Fred and the Hunter household too.  Hoping Fred, Nick, Nicola, Hugo, Roland and Alex are all well as I’ve always enjoyed visiting their home so much. 

Laura, Gary and Raj will be pleased to know that we have now met Jimmy Saville twice.  He came in Monday and Tuesday and claimed that Tom was in the hospital under false pretences because he doesn’t allow people in here that are better looking than him.  He was great and was wearing quite a crazy outfit.  Molly dropped by to see us (which was lovely) and was also thrilled to meet him too.  She was here when he got his voice back for the first time.

 Steve came to visit me yesterday the first of my friends to hear my voice.  I was a bit tired as I was also doing 5 minutes off the vent every hour but I really appreciate him coming and I hope he enjoyed it too.  Mum came for most of the day we had a lovely time being able to communicate and I recounted some of my memories of Bulgaria.It is Thursday today and we caught up on the comments from everyone on here and they are so all great and we were laughing so hard at a few of them.  We enjoyed hearing about Babara’s gardening experiences thank you.  I want to thank everyone for all the support and the messages that make me smile.  I want to reply to everyone but would be difficult as there are so many wonderful comments.   I have few messages to say to people… Congratulation to Jules, we think you’ll make a great mum.  We laughed so much at your message Haze. Great to hear from all you people abroad…Nat, Ged, Blodwen (Jenny), Sasha, (the people in Wales if that counts as abroad), Tom Ernst and others from Switzerland.  Thank you to James for his concern about my musical taste hopefully this will be something that mends with time, with respect to the ventilator settings I have no End expiratory pressure (PEEP), the rate is 12 breathes per minute and a tidal volume of 1.3 litres.  It’s great to hear from all the friends who I may not have spoken for a while. 

We have been enjoying the ‘Heros’ series courtesy of Lao.  Thank you so much.  And thanks to Raj for bringing it.  Thank you for the continuing flow of cards.  The walls are filling up beautifully.  Thank you to Mandy for the rainbow maker.  It managed to catch direct sunlight this morning at 7:30 and my room was filled with moving rainbows.  Thank you for the offers of audio books, my answer is yes please.  Lovely to hear from Bill and Colleen from Oregon, I’d love to see Bill in June if you have time to visit and would love to be sent any thing of interest by you Colleen, I feel isolated from the fast moving areas that have held my interest in the last few years, my interest having being fed and satisfied by people like you two especially.  My email is whizz2000@hotmail.com.  If anyone else wants to email me on this feel free. 

One question:  If, on average, we were to use more than 10 percent of our brain, would we worry less about what we don’t possess?

May 8th Progress

Ellen texted me to say that Tom has had his tracheostomy tube changed. He is able to talk. So I called and spoke with Tom. It is not easy – he has to get used to speaking while on the ventilator. But he was able to tell me of plans to move forward with “weaning” tomorrow. I told him how delighted I was to hear of this great progress. Wow!

May 6th Progress

David visited Tom and Ellen May 3 to 5 and was able to see for himself real improvement as the latest bout of chest infection was brought under control. There will be a risk of recurring infectioions as Tom learns to breathe on his own and the intensity of ventilation is reduced. But the physiotherapy remains intense and Tom’s spirit is strong. Ellen provides extraordinary support working in partnership with the physios and nurses. Tom had animated discussions yesterday with Laura, Raj and Gary; then later spoke with Susie and Polly. Today Tom and Ellen were joined again by Polly and Felix. A Tara Puja for Tom took place in Kathmandu on the 5th May.

May 4th Message from Tom

I am feeling better now that my body (and the physiotherapists) have chased away the infection in my lungs. Polly and Susie have been a real strength to me as this was happening. Jeff, the respiratory person, is restarting the process of weaning me from the ventilator again: they had to stop it last time because of the infection. I am keeping my fingers (virtually) crossed that it works this time.

David arrived last night from Geneva: he had come in that morning from New York. He joined me and Els and we got the TV working (a bit). We spoke a lot: he brought me news of Josie, Luc, Gillian and Spring in Manhattan.

I have been finding music the most effective form of escapism. During the last few days I listened to a lot of music using the iPod that Lucas and Josie gave me (chill out stuff..variable quality), and the iPod that Tony (Ellen’s uncle) lent me with the brilliant playlist that Chris (Tony’s son) created.

I have been thinking about my favourtie bands and from my limited musical experience the list so far is REM, Pearl Jam, Beatles, Dylan, Counting Crows. Other good bands include Velvet Underground (thanks cousin Joe), Joy Division and Coldplay (whose music is so peaceful). Some of the songs I have enjoyed recently are True Colours by Phil Collins, Meet Virginia by Train All You Need is Love by the Beatles, and Last Kiss by Pearl Jam. I suggest that if you have any spare time and the inclination you should give them a listen. Many generous people have sent me music. it is all much appreciated. Thank you very much.

May 1st: Tom’s thoughts and feelings for today

Making me down: The seemingly slow progress of the last two weeks, with
the yearning for the feeling of water down my throat, and for the taste of fruit. The lack of ability to communicate along with being in the only room on the ward without a TV. A bit frustrating missing the football and hearing it indistinctly from the speakers of other patients’ TVs out on the ward.

I have been guilty of feeling sorry for myself. I have been helped to remedy this by thinking of people who who are worse off than me. A physio told me of a four-year old girl who was in a car crash and her spinal injury has lead to her having a ventilator for the rest of her life. This puts things into perspective.

I have been thinking alot about Sebastian my uncle who was one of the most energetic, charismatic people I have ever known.

Picking me up: The comments on the website which I want to thank everyone for. I will avoid mentioning specific ones as there are so many that are special.
Thankyou to the Stanley family for the digital Radio, mum for reading to me and dad for the collection of entertainment systems, which give me a welcome distraction from the danger of circulating thoughts.
Thankyou to everyone who has sent me cards. They have brightened up the room. Thanks for the balloons from the ECE department at Brunel that are still inflated.

The effects of the fevers and the chest infection have eased off and the consultants are considering further progress in terms of getting my voice back and weaning off the ventilator.

My uncle Felix (Susie’s brother) came to see Els and me today, with Susie: he has written a comment about the visit…you can see that we had a great conversation.