Category: progress

Tom here

Just a quick note to say that I heard today that I am to receive a first class Honours degree in Electronics and Microelectronic Engineering from Brunel University. I’m really pleased. More details to follow..

Tom and Polly celebrating the good news this afternoon
Thanks for the picture, Nicole

Tom moved to the rehab ward – St David’s – yesterday (Sunday) and we heard today that he is now more mobile. He is also mastering the software and gadgets needed for independent operation of the computer. (I am not able to be with Tom right now – I write from the Pacific Health Summit in Seattle whence many well-wishers send their greetings).

Hot on the heels of a visit by Claudia and Kenah on Saturday June 2nd (see picture), on the Sunday Thomas Ernst travelled to Aylesbury from Geneva (en route to paddle a bath down the River Thames) and David came in from New York. Ellen’s cousins Emily and Jo were visiting her. After Tom N had got up, he had a picnic lunch with Ellen and her sister Louise, Emily and Matt, Jo and Dan, Thomas Ernst and David. He asked that it be outside the hospital and we found a spot in a field looking oveer the Chilterns. It was quite hot, but there was enough shade for most of us (though we had to look out for stinging nettles). We ate very nourishing food, and chatted for hours (see pictures). David lent Tom his Pradas (and as you can see Tom looks good in them). This was another step forward for Tom who hopes to have the trachaeotomy tube out tomorrow. Polly came from Oxford and we all tried out different gadgets for stroking and stimulating the scalp and reducing neck pain (Orgasmatron – heard of it??). And we had a fun evening: we laughed a lot. Thanks for coming Thomas.
Next day (June 4th) David returns – meets up with Barbara (first time after nearly 20 years) and they watch as the Tracheotomy tube is removed. Brilliant. When Ellen comes in we all share the joy of a great LEAP forward. The doctors visit en masse, Tom has lunch (swallowing feels very different) and we install the new laptop. David starts his travels again.

Tom and Jeff celebrate the removal of the Trachy tube

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….

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!. 

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).

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!

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.