While Sarah was in Stanmore I sent out a daily bulletin on her progress to a growing list of family, friends and colleagues, and continued with occasional e-mailed updates after her return.
SURGERY AND RECOVERY
Wednesday 16th February (Day 3)
Sarah has had an up and down day. She's had quite bad diarrhoea, of which she's been unaware until it's too late due to the numbing effect of the epidural. She was isolated in a side ward in the Intensive Care Unit until they established that she hadn't got an infection. When they moved her back out again this afternoon, they put her instead in the High Dependency section, which is nearer to the door and which means that she is one step closer to going back to the general ward.
This evening she became very distressed when she was put on a new breathing support machine that blows room air into her lungs through a mask that covers just her nose. She has to synchronise her breathing with it, which is very claustrophobic for her. If the problem continues I think we'll insist that they give this up. However, the oxygen saturation of her blood is quite poor, so something needs to be done, particularly at night.
But her back is now very straight, as proved by her x-rays! She seems to have grown very much taller, and we're going to have to wait until she can stand again before we can check this out. My bet is on a two inch height increase. Also, because a large part of her spine has now been fused, her growth from now onwards will be greater in her legs than in her trunk. Apparently, this is a very popular side effect!
We've tried to make sure that everyone knows how she's getting on, either through direct phone calls or passed-on messages. However, we don't seem able to get to everyone as often as some would like, so, until she's released from the High Dependency Unit, I'll try to send a daily update via e-mail. At some point I'll post photos on our web site as well!
Thanks to everyone for their kind wishes!
Thursday 17th February (Day 4)
A much better day, thank goodness. Sarah had a good night on the breathing apparatus and woke feeling refreshed for the first time since .... well, ever, I suppose. She was being given oxygen throughout the day through a mask that she found less oppressive, but by the end of the day too much oxygen was making her feel nauseous and very tired. The diarrhoea problem eased but was replaced as a concern by a blocked catheter, but this was resolved by late afternoon. She's still got an epidural numbing her spine, but is gaining more sensation in her left foot.
The surgeon has visited her again and reckons that she should now be THREE inches taller! I'm losing track of the number of envious females who have commented on her prospects for slender body and long legs and how they'd like the same. Sarah's surprisingly unmoved by this - she just wants to be taller than SOMEONE!
We're hoping that she'll move
back to the general ward on Friday or Saturday. However, this will not
be entirely good news, as she'll lose both the quiet atmosphere and the
excellent one-to-one nursing that she's been getting in the Intensive
Care Unit. In addition, she'll come
within range of the teaching staff back in the Adolescent Unit, which
that she'll be expected to join in with school work - bad news! The
is the bright, breezy, jolly, enthusiastic type that you'd
love to invite to 'go forth and multiply' if you're feeling under the weather - she even gets MY back up with her insistence that everyone should join in - "I say, let's all make some Carrot Cake", was one of her more bizarre requests to some fairly grumpy kids. I think I could become very popular by inventing a 'Let's stick a live ferret down teacher's pullover' game. Grrr!
For the last three nights I've been reading to Sarah from a couple of books about Richard Feynman, the Nobel prize-winning theoretical physicist who's something of a hero of mine, even though his science is completely beyond me. I've read to her from these books before, and it's a joy to see her grinning underneath all of her breathing apparatus at the familiar stories - she must be well on the mend! She's eating like an anorexic sparrow on a crash diet but, hey! that's normal! She getting argumentative - that's normal too!
Every day I cart a large carrier bag full of get well and birthday cards up to Stanmore and every night I bring them back unopened. She's not really up to opening them yet, but it'll be a nice thing to do when she's back on the ward.
Anne's still staying at Stanmore in the parents' accommodation and has joined up with a little group of other mothers who watch and wait. She'll need to come back home at some point soon, so that she can have a proper shower and can get some fresh clothes - she's leading a very strange moment-to-moment existence, with no priority other than to be there for Sarah. It's restful, in that she's almost in a state of suspended animation, but disorientating. Nipping out to McDonald's is like stepping into an alternative universe! Well, that's true even on a normal day!
Sorry for this rambling message - it's the only way I can unwind after plodding back home by motorway at midnight. I reckon that, by the time Sarah comes home, I'll have driven around 1,500 miles between here and the hospital. But it'll have been well worth it!
Friday 18th February (Day 5)
Friday was a case of two steps forward and one back. She was moved from Intensive Care back to the Adolescent Unit, which is good news. However, she's been feeling quite nauseous, which she attributes to the oxygen she's being given to keep up her blood oxygen saturation rate. The nurses say that this isn't the case, and I have to say that I'd back their judgement over Sarah's. ;0)
On Friday night she had her epidural switched off but left in place for contingency, and was given oral painkillers. If there's no reaction the epidural can be removed for good. That will mean that her sole remaining hook-up with technology is the clip-on lead from her toe to the blood oxygen monitoring machine. She's tired, feeling generally low, and is sleeping a lot, but her back is giving her no trouble at all, thankfully. Because of the epidural in the spine she couldn't get up, even if she wanted to.
The next step is to have her back x-rayed - this won't now be before Monday - and if everything looks OK she can then leave her bed, sit in a chair and remind herself how to walk again. She'll also be able to have a brace custom-made to fit her, and she'll wear it for the next six months.
We're still getting anxious
follow-up calls from concerned family and friends who haven't heard
from us for a few days. Anne's
virtually incommunicado due to (understandable) hospital restrictions
the use of mobile phones. There is, however, a public phone on the
when it rings the person nearest to it takes the call and then passes
it to the relevant parent. If anyone would like to speak to Anne, please mail me back and I'll reply with the number. Once Sarah's more mobile you could speak to her as well!
I'm setting off again for the hospital shortly, forsaking the big FA Cup match between Charlton and Bolton. Luckily, Stanmore's so high up on the northern fringes of London that I can even pick up broadcasts from our local radio station (Millennium FM) so I should be able to listen to the live radio commentary! Come on you Reds!!!!!
Anne's still in residence at the hospital and is toying with a one night dash homewards for a bath and the chance to run some clothes through the washing machine. She's determined not to do this, though, until Sarah's understandable anxiety eases off. One of my enduring images of this time will be Anne and a couple of other mums standing by one or other of the beds in a darkened ward, like a scene from a Georges de la Tour painting or perhaps Macbeth - 'When shall we three meet again?'
My apologies if anyone is getting overloaded with these updates. I've had several messages from people who really wanted to know how things were going but didn't know how to contact us, so I hope that it meets a need! My ambition is to stop sending them as soon as possible because Sarah's back home and comfortable!
I'll try to get some photos of Sarah and the hospital up on my web site over the weekend. I'll add this to the page I've already started at: http://www.dhatch.dircon.co.uk/back.html
Saturday 19th and Sunday 20th
February (Days 6 and 7)
Well, the website's up and running at: http://www.dhatch.co.uk/1intro.html This picture was taken earlier this evening and shows a very mellow Sarah. Earlier in the day she'd finally had her catheter removed, so her more cheerful expression is understandable.
She's finally made a start on opening her birthday cards and get well cards, but it's taking her a while! We're hoping that tomorrow (Monday) she'll have her x-ray and will then be fitted for her brace - this will then take a couple of days to get ready. The next step would then be to get her gradually to her feet. It would be wonderful if we could get her home by Friday, but I suspect that she'll be at Stanmore for another week yet.
Her nighttime breathing remains a problem. Whether this is a new phenomenon is is something she's been struggling with for a while we're not sure. Last night (Saturday) she didn't use the respiration equipment but was connected to the machine that monitors her blood oxygen. Apparently, the alarm kept going off as her oxygen levels dropped and the night staff had to keep rousing her to get her to breathe. As a result, she was pretty tired when she woke this morning. If things don't pick up she'll have to carry on with respiration support when she comes home.
In the meanwhile, I've learned how to use the washing machine! The problem is that I've now got nine shirts to iron, but at least I've got some clean socks to wear. Anne has found and used the swimming pool. She's also revelling in having a cooked breakfast every day - costs about £1.50, apparently. I'm getting VERY tired of Big Macs, though!
Today, she went into Edgware with one of the other mothers, expecting to visit a very large Marks and Spencers store. She was disappointed, as it was one of their smaller stores. When she came back, she said, "Well, that trip was a disaster". Sarah, seeing the nurse's concerned expression, said, "The car didn't break down and she didn't get robbed. The M&S was small. That's what SHE calls a disaster".
Monday 21st February (Day 8)
The day started badly, with Sarah getting very depressed about having to wear the mask overnight and have her lungs inflated against her will. Then having the trip to the x-ray and brace-makers put off made things worse.
But the cavalry came to the rescue in the shape of Sarah's good friend Lucy, who visited her this afternoon and cheered her up immensely. Additionally, by the end of the day, it was confirmed that the moulds of her back, from which her very own lightweight brace will be cast, will be taken tomorrow. Once she has her brace she can leave her bed and sit in a chair, and then start to take her first steps.
Judging by the experiences of her peers, it seems that once she's on her feet progress will be rapid. It would be nice to get her home by the weekend, but I suspect that this won't be possible until early next week, i.e. two weeks after the operation.
We're still finding that people who we thought were up to date are ringing us in a bit of a state to find out how Sarah is. When you're so closely focused on events as they unfold it's difficult to keep tabs on who knows what. Quite a few people who have replied to these updates have said that they are reminded of similar experiences with their own children. Indeed, we have been very lucky with Sarah's health over the years, so maybe this episode is just a case of us catching up!
Anne and I are living in limbo. Anne has only left the hospital grounds very briefly on two occasions in the past eight days. I reckon that I've driven over 700 miles in the past week between home and Stanmore. I'm also heartily sick of McDonalds - nothing new there!
Several of Sarah's schoolfriends are going to visit her tomorrow - that's bound to lift her. If she gets the brace moving as well the day could end very well, especially as she's due to have a 'sleep study' tomorrow night, i.e. no air pump all night!
Tuesday 22nd February (Day 9)
This is getting to be a bit like Alistair Cooke's 'Letter from America', and almost as long-running! Every time I think of skipping a day I get a couple more nice messages from people who say that they enjoy receiving the daily updates on Sarah's progress. So, because today was a *very* good day, I'm delighted to oblige.
The day started badly with another poor night on the breathing equipment, but picked up quickly with a trip to the plasterers - well, to the guys who took plaster impressions of her back and her front and who will use these to make the brace that she'll be wearing for the next six months. Her brace should be ready on Thursday, so we now have a date for her to rise, Lazarus-like, from her bed.
My guess, judging from the progress of other kids on the ward, is that the first spell on her feet will exhaust her and she'll take a couple more days to move at anything more than a shuffle. They all seem to go through a phase of creeping about as though clutching something delicate, fragile and extremely valuable between their knees, with a disbelieving but ecstatic smile on their faces.
So, Sarah's departure for home is probably not likely to take place before next Monday, but, hey! who cares?! She was told that if you walk into the hospital before the operation you'll walk out again at the end, and this seems to be true in all cases. For some reason this reminds me of the joke about the bloke who was talking to the surgeon after an operation, and who asked, "Will I be able to play the piano, Doc?", and who, receiving an answer in the affirmative, said, "S'funny. I couldn't play it before".
But the highlight of her day was
the visit in the
afternoon of three of her close friends: Lucy (making her second visit
as many days), Sarah B and Fionnuala. After being measured for her
brace, she'd been allowed to dress in everyday clothes, although she
still had to
lie down, so at least she could feel a little more normal and less like
patient. After they left she virtually collapsed with tiredness, so
she'd clearly enjoyed herself. And tomorrow another close friend,
Abigail, is coming
with her parents and sister from Sussex to see her. I'm sure that this will give her another hefty push back towards the real world.
And the day closed for her in pure bliss - no breathing support tonight! Because we know that a) a post-op sleep study will be suggested at some point, and b) we'll be lucky if we can talk her into another overnight stay in St. Thomas' Anne suggested that the study should be carried out while she's still at Stanmore. So, she'll just have her blood oxygen levels monitored tonight, to see how she copes completely unsupported. This is at least as much for Anne and I as for the medics, as Sarah's already looked me straight in the eye and said with fierce and bitter determination, "I'm NOT using that machine when I go home". Good for her, but it gives us a bit of a dilemma!
In the meanwhile, Anne, typically for someone who has sat at an institutional bedside for days on end, is starting to lose her hold on reality. She mislaid her watch, only to find it was on her arm, she wasn't sure what day of the week it was - things like that. And I am losing hold on the tidy house that Anne left behind. It seems simple - don't go into rooms you don't need to use, if you pick something up, put it down again where you found it, if you have a cup of coffee wash out the mug immediately and use the same one again next time, clean up as you go, and so on - but why does everything look such a mess? Answers on a postcard, please!
I've now had two McDonald's-free days on the trot, but that doesn't mean that I'm eating well - I'm just eating different rubbish! But Sarah's on the mend, Anne's happy in her community of devoted mums, and so I just don't care! Peace and love, man!
Wednesday 23rd February (Day
I don't quite know how I do it. I drive the 45 miles home from Stanmore on the M25/M11, arriving home at somewhere around 11.00pm, resolve to just send out a quick update and turn in, exhausted. And what happens? There's stacks of e-mails to read and answer first, and then I start to wake up again as I begin to write this. And it's struck me that, although I thought that I was writing all of this to let you all know what's been going on, a key part of the process is that I'm sorting out my own thoughts at the same time. So it takes ages!
After I left last night the night nurse told Anne that the sleep study had had to be postponed and that Sarah would have to wear the face mask again. Anne dropped some of her 'nice guy' exterior and said, "Well, *you* tell her then". Sarah had been about to drop off to sleep and was rudely awakened by being manhandled as the apparatus was put on to her face. She was very upset but controlled herself well. Anne thinks that it would be a salutary lesson for some of these professionals if Sarah let rip at them the way other kids do. Not nice.
So there was a bit of a stand-off today between us and the staff. My view was that Sarah would *not* be wearing the gear tonight, even if they screwed up on the sleep study again. Their view was that they are responsible for her welfare until she is discharged and that they can overrule us. And the resolution? You'll never guess. The sleep study *did* take place, meaning that Sarah has to breathe unsupported all night, connected to a machine that traces out her oxygen saturation and with an oxygen mask standing by just in case. This time I waited around to make sure that the study was kicked off properly. Well, well, well. Would that have happened anyway? Or did we become a little too hot to handle? At any rate, face was preserved all round and a good old English compromise achieved - we're all still friends.
But this, believe it or not, was *not* the highlight of an eventful day! The chap who was making her brace worked on beyond his normal working day to finish it and delivered it to her in the early evening. Give that man a round of applause! And at 7.00pm on the tenth day Sarah did rise from her bed, albeit briefly - what a milestone! I left at about 10.30pm, looking back on what could almost have been a nativity scene - darkened ward, pools of low lighting, very quiet - with a tired but happy Anne gently massaging Sarah's foot and Sarah drifting off happily to sleep sans face-mask.
So, her day 11 target is to stand on her feet and perhaps even walk a few steps. If things go well we could be looking at a discharge from Stanmore this weekend and a resumption of a more normal life for the three of us. We're not there yet, but we're close. Our enormous thanks to all of you who have rung us, or sent cards or e-mails. It's nice to know that we're not going through all of this alone.
My head's about to hit the keyboard. Goodnight everybody!
Thursday 24th February (Day 11)
Sarah's sleep study went well last night and confirmed that she really can't do without the breathing support yet. According to the night nurse who was monitoring her her oxygen saturation dropped and triggered the alarms several times, and she had to shake her lightly to make her take a breath and restore the oxygen in her blood to a more satisfactory level. All a little worrying.
For all we know, she might have had this problem for years, but it has to be taken very seriously in this post-operation period. She now understands better why she needs the air pump at night and that she can't really refuse to use it as soon as she comes home. The risk is that she'll put such a strain on her heart over time that she'll cause damage to it. And as the mother of one of the other patients has pointed out (her daughter Gemma suffers badly from cerebral palsy), lack of oxygen can have a very serious effect on the brain. Luckily, Dr. Issler, our local paediatrician, is on the case and is looking for more acceptable methods of providing the nighttime breathing support that Sarah so clearly requires.
But, in spite of this, we're not as depressed as we might be, because Sarah is getting better every day. She has sat in a chair several times today, and when I left at 10.00pm was planning to sleep in her brace in order to get used to it. She still has a problem with her left leg, and can't put her foot to the floor due to numbness and pins and needles. Her foot is really sensitive to touch and you have to be really careful not to knock it when turning or raising her.
It now seems that she won't be released from Stanmore until Monday, but she's OK about that - she knows she has to be able to walk a bit before she's discharged. The next milestone is to have the staples removed from her wound later today (Friday). You can see them very clearly on her x-ray - we've invested £20 in copies of the before and after shots - and they look exactly like ordinary office staples. I think that they might give her some grief when they're removed.
We're going to miss Stanmore when we leave. The nurses have been phenomenal - very friendly, responsive and caring. The twice a day handovers between the day and night teams have been really impressive. The incoming team gets a really excellent résumé of each patient and the latest state of affairs from the senior nurse on the outgoing team and this also gives the patient and parents a good overview.
Anne has made several good friends amongst the other mothers, some of whom have now left with their children. The two who are left are more serious cases who will still be there for a couple more weeks and will doubtless miss Anne and Sarah when they go. There have been several exchanges of e-mail addresses! And I'll miss the driving - over 1,000 miles since Sarah was admitted - but not a lot!
Thanks for listening - doing this daily summary helps us to see the progress that Sarah's making and to keep our spirits up!
Friday 25th and Saturday 26th
February (Days 12 and 13)
Two days very much like one another, with Sarah getting out of bed several times to sit in a chair, wearing her brace, but unable to put any weight on her painful left foot, let alone stand up on it. It now looks as if she's unlikely to leave hospital before at least Wednesday.
She still hates wearing the face mask at night, but puts up with it as bravely as she can. She's been told that she needs to get a minimum of four hours on it per night, ideally five or six, and that after that she can take it off. She still has the staples in her back, but might well have them removed today (Sunday). I hope that doesn't leave her finding it uncomfortable to lie on her back since that's the only position that brings her any consistent relief. The good news is that today she went from 7.30am to 10.00pm between doses of painkiller, in both cases merely paracetemol.
Grandma comes to visit
I had a hectic Saturday morning tidying up the house so that when Anne finally gets back here she won't have cause to give me a hard time! I've cooked myself breakfast, done my washing in the machine (so, THAT'S how it works!), watered the plants, swept the carpets, cleaned the bathroom and thrown out all of the newspapers and junk mail. The next person who asks what Anne does all day will get a black eye, 'cos now I know!! My reward for virtuous conduct came in the afternoon with a 1-0 home win for Charlton Athletic, a victory that extended their lead at the top of Division 1 to eight points!
But the feature of her stay in hospital that has surprised and delighted me the most has been the sense of community and friendship between the parents in the Adolescent Ward. Good news is celebrated and setbacks are sympathised with on an 'All for one and one for all' basis that brings a lump to the throat. The many exchanges of e-mail addresses should help us to keep in touch on our children's progress long after they leave Stanmore. If ever there was a single use of the Internet that justified it this is it!
Sunday 27th February (Day 14)
A momentous day! It started well, with a helpful nurse rooting a small wheelchair out of a cupboard so that Sarah could become more mobile. This then allowed her to make her first trip to the bathroom rather than to depend on the bedpan - good for her self-esteem and dignity!
In turn, this then allowed us to take her out of the ward for the first time, to the hospital shop a hundred yards or so away. The cold blustery wind made this a less happy experience than it might have been, but it was still another milestone.
Yet another milestone was the removal of the 55 staples that had been put into the wound in her back. Only one proved troublesome to extract, but this was managed through putting some cream on her back for an hour to numb the site before removing the offender. All 55 are now in a plastic jar to be kept by us as a souvenir along with the x-rays!
But the real highlight of the day was that she walked for the first time! Admittedly, Anne and I had to support her carefully, but she put her weight on her painful left foot and walked about twenty feet. The congratulations that she got from nurses and patients alike was heartwarming. Another step forward was that she downed a whole McDonald's Cheeseburger, from a quantity rather than a quality viewpoint of course!
The smiles tell their own story!
Actually, maybe the real highlight of the day came at 9.00pm at the end of our fourth participation in another Sunday's hospital-wide 'Bedside Bingo' on Radio Brockley, when I won another mug - it must look like a fix! With two others we've already won we now have one for each of us!!
So, the immediate objective is to present a case to the hospital along the lines of:
a) Sarah is occupying an
orthopaedic bed that is
surely needed by other patients yet to be admitted
b) Her orthopaedic condition is resolved
c) She is beginning to walk but it might take a while to reach the point where she can walk unsupported
d) She understands the importance of breathing support and will commit to using it at home
e) Her mood and her progress would be much enhanced by her being allowed to recuperate at home
f) Her local Paediatrician and Occupational Therapist are both ready and willing to turn on whatever support she requires when she gets home
g) ....... so why not discharge her soon?
Sounds easy, but I'll bet it won't be!
Monday 28th and Tuesday 29th
February (Days 15
We had been warned that we should expect good days to be followed by correspondingly bad ones and vice versa, and so it has proved, not only for us but also for other families in the Adolescent Unit.
Monday (Day 15) was depressing, with Sarah still barely able to walk even with a zimmer frame and becoming more tearful. When pressed by Anne for an idea of a potential discharge date the ward staff produced 13 targets for to hit in order to be considered for release. The first target was that she should understand why she has to wear the face mask at night - in my view that was a target for THEM to achieve, not for Sarah. Another was that she should be prepared to wear her body brace all night (she was already doing this) a third that her parents should be able to help her with her brace and be confident in turning her in bed, etc. (we'd been doing this for days). In short, the list was a mix of things that had already been achieved, with a few unrealistic targets thrown in for good measure.
The general rule is, as I've said before, that if you walk in you walk out. However, in our opinion, those who do leave on foot are still walking very tentatively, and when they get home will probably rest after even quite minor exercise. It is therefore quite reasonable, in our opinion, to maintain that Sarah wasn't walking very well when she entered and that a similar 'hit' to that which had slowed up 'normal' kids would mean that she wouldn't be able to walk properly for some time. In other words, it should be acceptable to discharge her in a wheelchair.
It shouldn't be thought that there was any malice in the way in which these obstacles were being set for Sarah, merely that insufficient guidance on Sarah's specific case had been given to those who take the decisions. For all of the fantastic aspects of the NHS its huge weakness still seems to me to be the appallingly poor exchange of information about Sarah's rather unusual case between the various expects (orthopaedics, paediatrics, neurology, sleep study specialists, GP etc.), all of whom are excellent in their own right. So, when guidance is required who better to provide it than the person who has known Sarah the longest and who does voluntary work for Action for Sick Children, a charity that supports children and their parents in hospital? That's right - Sarah's very own mum!
Sophie, Charlotte and Sonia - looks like a wake, doesn't it?!
Sarah's three second cousins (Sophie, Charlotte and Sonia) came to visit with their dad, Chris, who lightened my day by suggesting a 'swift pint' in a nearby pub. It wasn't a memorable pint but it made an excellent break from routine! The day closed well with the presenter from the hospital radio station coming round to collect record requests from patients and parents. Sarah chose 'It's Not Unusual' by Tom Jones. Eh? Is there some 'retro' movement amongst teenagers at the moment? Anne chose the favourite anthem of abused women, Gloria Gaynor's 'I Will Survive', which probably sums up her mood after two weeks in a chicken coop of a bedroom and a emotional rollercoaster ride. And, perhaps prophetically, taking into account what was to happen the next day, I chose 'Something In The Air', by Thunderclap Newman. To be honest, I chose it to wind up the DJ, who, I was confident wouldn't have it in his collection, but amazingly he did!
Day 16 (Tuesday) started as usual, with Sarah depressed and tearful about still being incarcerated and feeling that she was making no progress. In the meantime, Anne's appeal to the Occupational Therapy and Physiotherapy teams back in Greenwich (please, help us to get out of here!) was bearing fruit and calls were being made. Her explanations that we had a whole raft of support laid on for Sarah's return home, together with those targets which Sarah *had* achieved and a dawning realisation that Sarah is something of an unusual case, obviously began to hit home.
Suddenly, from having no date, Anne and Sarah were told that she could leave today! However, one target still unachieved was being able to get into a car and by now it was a bit late to organise. Besides, Anne knew that so much packing and tidying was required before they could leave that delaying their departure until tomorrow (Wednesday) would still be OK. So, tomorrow afternoon Sarah will be discharged into the loving care of her mum and dad! Wooo hooo!
Jason, Amardeep and Sarah
Two other 'inmates', Jason and Amardeep, will also leave tomorrow, so the Adolescent Unit will be pretty empty by the evening. It would have been even more depressing for Sarah to have been left behind when those who were operated on at the same time had left. The only drawback? We won't have the chance to win a fourth mug in next Sunday's 'Bedside Bingo'!
So, it's home tomorrow, and the final edition of these daily updates to follow!
Wednesday 1st March (Day 17)
So, seventeen days on, we reach the conclusion - Sarah's now at home again and taking it easy. What a relief!
It seemed to take ages to pack the car, what with all of the cases and bags we'd taken in the first place, plus the things that we'd accumulated during Sarah's time there, plus the 'Nippy' air pump, plus the walking frame. Sarah sat in the front passenger seat, which left Anne crammed uncomfortably behind her, wedged in next to all of the luggage. Sarah was surprisingly apprehensive about leaving, which confirmed that it was high time we were home.
And the neighbours started to appear as soon as we arrived! The porch was full of balloons (thank you to the Peters at No. 1!) and Rupert next door had taken delivery of the commode that will save Sarah having to keep climbing the stairs or being confined to living upstairs for a while. Other equipment is due tomorrow, e.g. wheelchair. Our local paediatrican, Dr. Issler, had sent Sarah a wonderful letter, saying that she realised that Sarah hates the 'Nippy' and was looking around urgently for more palatable solutions, but urging her to continue to wear the face mask at night until a sleep study shows results equivalent to last autumn's tests at St.Thomas'.
Sarah's already walking better, but still needs two people to help her up the stairs. She can't really be left alone at present, so I've taken two days' holiday so that between us Anne and I can get the household running again and still give Sarah the care she still needs.
We've had the first set of photos back from the developers, including the one of Sarah's bruised and stapled back. At some point I might include this on the website, but it's not a pretty sight! Instead I'll close with a nice shot of her sitting in her comfortable armchair with her Great Ormond Street mugful of tea.
Her recovery will be slow, but she's already planning to get on with her homework tomorrow, so that she doesn't fall behind at school. She's sharing the bed with Anne tonight, using the air pump and facemask. Anne will make sure that the mask is removed after she's done her four hours minimum. And for the next few days/weeks I'll be climbing into her bunk bed - I must remember not to sit up suddenly and crack my head on the ceiling!
So, apart from the occasional progress report, this is it. I've felt uneasy about pouring so much information into people's in-trays, but several of you have said that it's been good to be in touch with what's been going on. One performance measure that seems to show that the updates have met a need is that the number of messages awaiting me on the answer phone each evening dwindled virtually to nothing as time went by.
I'll probably be getting out our
laptop for Sarah to dive back into cyberspace in the next day or so, so
watch out for her messages!