Friday April 27th In St Andrew’s Ward at the National Spinal Injuries Centre. Watching a video, doing computer stuff with Ellen , coping with itchy face and keeping going well.
Saturday April 28th Raj and Wayne from Brunel visited and worked with Ellen and Tom on IT practicalities. Tom says thatÂ they wereÂ great lip readers: this meant that there was much conversation, many smiles and a lot of laughter. Ideas abounded and some plans were laid. Polly and Susie visited in the evening: Tom was tired but delighted to see them. He seems to be getting on top of this latest chest infection (though such challenges will recur again and again, especially in this early stage). Josie and Lucas called from New York.
Sunday April 29th Susie and Polly were with Tom this morning. He had a good night. He would like there to be aeriel connection in his room so that he can watch broadcast TV (a very good sign). His notice board is filling up with cards and pictures. He was delighted when Ellen joined them during the day.
Monday April 30thTom had a good day with Ellen in the morning and with Susie later.
Thank you all Tom, Ellen and family are very grateful to the nursing staff who are constantly active and attentive, the ever-present and energetic physio team, the occupational therapists, Jeff the respiratory technician (in charge of the “weaning”), the physicians with their different responsibilities, and all the other technicians and assistants on who we all depend for his continuing recovery. We thank those who check in to this site and write comments for their consistent warmth and backup. This is reflected in very practical ways too. Members of the family have been helped enormously by transfusions this week, so several friends have responded by giving blood themselves.
Tom was much better when David saw him early this morning. He slept well and was rested. Ellen was with him for most of the day: she helped him revise and, as the day wore on, helped cool him as the fever restarted. He stayed in a great mood throughout the day and then slept quite early. David has returned to New York.
I just posted some pictures we took tonight while Tom and David were discussing what he might say on the blog.Â
Ellen has been with Tom all day: Susie joined for the afternoon and David came in the evening on his return from Geneva. Tom says “Today has not been such a good day. The doctors told me that they think my fever is caused by infection in my chest. A chest x-ray showed that my left lung is a bit clogged up. My blood tests showed that I was anaemic. That explains why I have been feeling so tired. So they increased the pressure in my ventilator, started me on antibiotics and gave me a blood transfusion. I am starting to feel a bit better. The doctors explained that recovery will not be linear: that I will have periods when things go well, and moments when they seem to slip back again. I am still planning to come off the ventilator, and to start speaking, as soon as I can. I have put up some new photos. Thanks for your great messages of support which are really inspiring.”
A day of continued improvement. Ellen was there most of the day. The night fevers are a challenge as they keep Tom awake and this provides lots of time for deep thought and analysis. He was tired today but still did the physiotherapy with full-on energy. He asked loads of questions about how things are going, met with Susanna and Oliver (who visited from Warwick) and spoke with David and with Gillian. Tom wanted to have his hair cut to keep cooler and Ellen reports he now has a No 1…quite short.
Tom continues to make progress though is frustrated that it is not happening more quickly. He would like to be able to speak, to sit up, to breathe independently and to eat (and lots more). But bones and tissues need time to heal, and it will take weeks, perhaps, for him to get used to breathing just with his diaphragm. Ellen has been with him for much of the day. Susie spent time with Tom and Ellen this afternoon. And more love and support comes in at all times. Balloons came from his tutors in ECE at Brunel University, cards from well-wishers and lots of great messages on this site (which we read to him – he smiles broadly at your memories, suggestions and ideas for what to when he gets better). He finds the temperature changes that come with this kind of injury (making him feel – alternately – very hot and very cold) hard to cope with.
Polly was discharged from hospital today: Susie took her home to her father Michael’s house in Standlake. She is doing well. Michael himself has not been well recently and was admitted to the JR hospital late this evening.
Another good day for Tom with more breathing alone, quality time with Ellen, a visit from Gillian, and revising for finals (using audio files and past exam papers). We sensed his positive energy, impatience to improve and appreciation of our enmgagement. We reflected on his mental focus and physical capaciy.
Susie was with Polly for most of the day. Polly is doing well and continues to recover from her surgery.
We have received many more messages from those who cannot get onto this site and will incorporate them as soon as we can.
David was woken during the night to be told that Josie (his daughter in New York) was also visitng a hospital. She went with our friend Jennifer to Chinatown for dinner last night and as they were returning their cab was hit from behind and Josie’s head collided with a hard place. Fortunately nothing serious was detected.
And we are inspired by the brave women and men running the London Marathon.
Last night Ellen’s sister Louise visited with Ellen: Tom’s friends Laura, Raj, and Gary from Brunel University visited today. Tom was delighted to see them and they spoke about computers and much more. Some beautiful flowers arrived by interflora. We read messages together and looked at pictures. Tom is determined to revise for his finals listening to audiotapes but is also working hard at the breathing (today 8 minutes off the ventilator, but very tiring again).
Polly is recovering steadily.
If you have a picture that you would like posted send it to email@example.com via www.yousendit.com. Please do not send the picture direct…
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.