Tom has worked so hard today. The doctors are really pleased with his progress. Tom is fortunate that he is physically very fit, positive and eager to get better as quickly as he can. Weaning from the ventilator has started in earnest, with six minutes unassisted breathing this morning, tests of his lung capacity (which are good), and continued adjustments of the ventilator’s pressure settings. But it is very tiring indeed, and Tom values quiter moments with Ellen to rest, chat a bit and watch a movie or two. He is so pleased when – for a few minutes each day – the cuff on his trachaeostomy tube is let down and he is able to speak. The plan is that he will have a new kind of tube that permits speech within a week or so. Occasionally Tom is allowed to swallow a few drops of water and this gives him real satisfaction. Why only a few drops at a time, you ask? The physicians want to be sure that his swallowing reflexes are up to scratch before they can give him all the water he wants: at the moment his nourishment and fluid intake goes directly in to his stomach through a tube.
I am writing this next to Polly in the West Wing of Oxford’s state of the art John Radcliffe Hospital in the Neurosciences ward. Susie has been with her all day and is now with Felix and Michael. Polly asks me to tell you that she is full of beans – delighted that the operation went well, but not so amused by her slightly swollen face. She noticed the swelling for the first time when looking in the mirror this afternoon. She wants things to go back to normal quickly before any visitors (family doesn’t count) get to see her. Seriously, though, Polly’s op has gone really well and we have been told that the nodule looked benign. We will get the full information about it in a week once it has been subjected to a battery of tests. Most tubes have now been removed and she is convalescing well. She has lots of great get well cards including some painted by Luc, Josie and their friends Kate, Rosie and Henry. Josie and Luc will have sleepovers at the beginning of next week so that Gillian can visit Tom, Oliver and Polly (it is not easy being thousands of miles away…).
Ollie tells us that he is hard at work on essay no 3: more on that soon.
Ellen and David left quite late last night after helping to turn Tom and settle him. It was his first night “on the ward” at the National Spinal Injury Centre and it went well despite some initial apprehensions that there would not be a nurse in the same room at all times. David visited early this morning and found Tom well-rested.
The regime in the new ward is tough. Intensive physiotherapy from Scott and the physio team as they train Tom to breathe again as part of the process of weaning him from the ventilator. Tom already is able to breathe unaided for a few minutes (and seems to be able to go for longer each day). Ellen has been taught to help Tom to cough – an important part of the “learning to breathe” regime. The occupational therapy team are helping him keep his limbs supple. The nursing staff maintain the systems and keep him clean and refreshed.
Ellen has been with Tom much of the day – David (after a short journey to London) all afternoon.
The staff here are deft, efficient and highly professional, yet always explain what is happening to Tom, handle him with the greatest care and are super-friendly to us all. And Tom remains super-cool and smiley whatever the dramas going on around him.
[We attached some speakers to the IPOD – Tom thanks Hugh and Hoonie for their music].
Susie was with Polly (Tom’s sister) at the John Radcliffe Hospital early this morning: Polly went to the operating theatre mid-morning and emerged from her operation early this afternoon. Susie gathered that the operation was successful, though it will be a few days before all the results come through. Polly (who was able to speak with David and Tom by phone this afternoon) will stay in hospital for a few days.
Oliver is at his university in Warwick busily preparing for finals (writing revision essays) …. the latest one – on Neurath – was finished today
Now that the hallucinations associated with painkillers and sedatives (like morphine and midazolam) have gone I am starting to understand the delicate balances within the different systems that are essential to my life. [In case you are wondering these hallucinations were neither enjoyable nor recreational]
Thanks to everyone who has written something. Your words help me through every day.
Thank you to Ellen and family for being pillars of strength during this early stage of recovery.
I look forward to being able to write to everyone as soon as I am able and to welcoming you here when I am better.
There’s one thing I have learnt for certain in the last two weeks – never take for granted what you have .
Some of Tom’s friends who want to write something have not been able to get themselves registered and enter their comments. If you cannot make the system work for you do send me your words and I will post them (firstname.lastname@example.org). Barbara Harriss of Queen Elizabeth House, Oxford writes
“Am reading the daily progress avidly. I would like Tom to know I’m thinking of him but I am such a dumb idiot I find I cannot log on.
When you next talk to Tom, please tell him that I forgive him for standing me up at the Playhouse and I vividly remember times which he doesn’t: spent walking in North Wales, when he was the head of the children but aged about 4 – perhaps even not 4. I am also remembering a visit to my place in France when Tom Oollie and Polly all tumbled out of a van; and where Tom made a gigantic leap into the local lake which was almost as good to watch as the great photo of him throwing Luc – on the website. And then we all spent the evening listening to the guitar on the terrace of my old house – dodging bats in the gathering darkness and listening to the squeaks of the Greater Edible European Dormouse which is actually a bat-like mini-squirrel with an appetite for rafters.
Kaveri and Eli kept the news of Tom’s accident until I was home from India. I had returned back to places I hadn’t visited since before Tom must have been doing A-levels and it has changed so much it is bewildering. My moment of truth came on one of the new fibre glass fishing craft provided by NGOs after the tsunami. These are what has replaced the 6 logs tied together which provided a perfectly adequate living before Boxing Day 2005. To stay afloat the boat, which looks like a very small punt, has two holes in the bottom – one to let the water in and one to let it out. We got completely soaked in any case from the water coming over the sides in an unsmooth sea. You had to stand and hang on for dear life to a rope attached to the front of the boat as it tossed on the big waves. The objective was to see off two delapidated trawlers which had encroached into shore water. This was completely unsuccessful and the crew returned with a pay off from the crew of the first trawler in the form of a pound of shrimps. I didn’t expect to end up doing something like that on this trip.
Kaveri, Eli and I are all thinking of Tom, Ellen and the whole family. I think our best role at present is to support with things like tasty dishes so people who are travelling don’t have to cook. It is good to read the news of the progress each day – keep it up Tom!
with love to you all, Barbara”
Tom has moved to St Andrew’s Ward: fewer tubes, less intense nursing and opportunities to listen to sounds on the new IPOD and LOOK OUT OF A WINDOW! David joined Ellen in Tom’s new home this morning. Polly and Susie have come to see Tom after Polly’s scan (she goes in later today for her procedure at the John Radcliffe Hospital in Oxford … we will tell you her news too).
Tom had another good day at the National Spinal Injuries Centre in Stoke Mandeville Hospital, Aylesbury: he seems positive and in good spirits, reflecting on how good it is that his brain is working as it should, remembering what happens from hour to hour, and really buoyed up by all the messages of support he is getting. (Ellen is reading them to him). He is sleeping well (his wake up call each morning is the visit by the physiotherapists). He hopes that he might – perhaps – be moved from the Intensive Therapy Unit into the acute ward (St Andrew’s) tomorrow (but he knows that bed availability can change from hour to hour so is not getting his hopes up too much). He is looking forward to being able to speak – and to eat real food – soon.
Good progress continues in the Intensive Therapy Unit. Tom was massaged yesterday and although he could not feel it he said that it felt as though the “fog had lifted”. Lots of conversations with the hospital staff, and with Ellen, Polly, and Susie – they have got the lip-reading down to a fine art. Using a complicated double mirror arrangement Tom was able to watch “Lost in Translation” with Ellen on the TV, and today Ellen read some of the comments that she had printed out from the Website – Tom was delighted and heartened to hear what had been written and said that he will contribute something as soon as he can. He remains positive and smiley despite being increasingly aware of the challenges he faces.
Tom’s best day yet. His sedation has been stopped. He is much more aware of what is going on. Great progress
Tom has had quite a restful night. Ellen has been with him all morning. He is listening to audiobooks, remembering what has been discussed from visit to visit. David is in New York with Josie and Lucas and will be back in UK next week.
Its my job to dig about for some tunes to put on an ipod for tom, for him to listen to during his time at Stoke Mandeville. I recon he must have exhausted mum’s ‘Birdsong’ and ‘Sounds of the Amazon’ cassette tapes by now. Chillout stuff is, I guess, optimal. So no speedcore or acid techno as yet. I’m giving him all the Shpongle albums for starters, and alot of Cafe del Mar.
Anyone got any ideas? Also on the lookout for good audio books…
Get well Tom!