Tuesday, January 30, 2007

Posted last thursday (as a comment):

This is Lucy, Emily's other sister.
Myself and the family apologise for the gap in updates, but I'm sure you'll appreciate that our number one concern right now is getting Em better, and being with her as much as possible is part of that. Thank you so much for all the kind messages. It's such a long and complex recovery process that updates can be somewhat fruitless anyway, as things can change between the space of a day!

As we posted last week I believe, the quintessential drama queen was never going to have a simple, mundane recovery, and instead has insisted on making her time in the ITU very interesting for the doctors. She has had a few obstacles so far, but the Harefield team are very confident about getting Em back on track and on to the ward. She has remained on ventilation, but this is now in the form of a tracheostomy (forgive my ignorance of medical spelling) which is not only more comfortable for Em but allows more freedom, and crucially, full consciousness!

She has been waking up very sweetly over the last two days, with lots of smiles and hand-squeezes along the way. Needless we are a very happy cheering squad tonight. Today she was much more awake and naturally full of questions, but she was able to communicate with the doctors and is much more satisfied knowing everything that's been going on. We have been ploughing through the mountains of cards and reading her the lovely messages, and i'm sure she's so much better for knowing the amount of support she has behind her. After a tough couple of weeks, Emily is looking much more herself and although she might have a while to go in the ITU, the doctors are very happy with her stability right now and we will hopefully be updating you with some more solid and long term good news soon.

If you feel restless and want to support Em in a more active way, then please get out there and promote the wonderful concept of organ donation. Buy a T-Shirt from www.livelifethengivelife.co.uk, tell a friend about signing up to the register, or simply disuss your wishes with your own family. If you've done all of the above, all that remains is to remember Emily's philosophy and go and do whatever makes you smile... life is for living.

Sunday, January 14, 2007

Due to the star of this blog being currently indisposed care of Harefield.Newlungs.are.us.com, you will have to do with some thoughts from mummy !
Firstly I would like to echo dear Abbie's sentiments and thank you all for such lovely, caring messages and thoughts. We are periodically reading them out to Em alongside the many beautiful cards.
"We are not out of the woods yet"odly seems to be the most realistic Drs quote yet and deals with the hundreds of questions that we pose on a daily basis. Let us not forget that it is Emily we are talking about and with Emily nothing is ever straightforward.
I was reminded today of chapter 1 in the life of EJT, namely Tuesday 13th March 1984 when the midwife phoned Emily's Dad to say "Get here as soon as you can, the baby is on her way". With huge excitement and trepidation he drove to the hospital.In between contractions with huge excitement and trepidation I phoned my friends (sound like anyone familiar?). Did the father make it? Well, this is Emily we are talking about, who made a star appearance 5 days later. And then all those friends who had paced around and held their breath with us for 5 days had the news that visiting the small beautifyl baby girl was to be even further postponed by her getting an early lead in the 'I've had more operations than you league' and putting the NHS to the test in neonatal care.
I don't need to remind you that, after some very strenuous roller coaster months wondering just how a newborn baby copes with surgery, the tiny perfect fighter came through with the most amazing and wonderful spirit I had ever seen and she has gone on to grace our lives in the most incredible way.
I mention this because I hope that our rocky start to Chapter 2 will lead to the same result, an eriched life, albeit with highs and lows, but full of happiness and joy.
Will keep you posted!

Thursday, January 11, 2007

This Emily's sister Abby, just a quick update:

After running into a few difficulties, though nothing unheard of at this point, Em has been put back on the ventilator. She is still improving in many ways but today has made it clear the road to recovery will be very long and difficult .

Thank you for all your kind messages, I will update when there is more news but as it is very much a case of 'wait and see' right now so updates may be slow but we are still very hopeful and know Emily is getting the best possible care from Harefield's brilliant team.

Thanks again for all your love and support
Abby xxxx

Tuesday, January 09, 2007

Well I expect most of you know the great news already from wonderful Uncle Grunc's comment on the previous post, but I thought I'd make it official by putting it into its very own post, because this is just the best news I have ever heard!!!


This is what we have all been waiting to hear and means that our awesome Emily is making great progress! I know from other people who have gone through double lung transplants, that their first breath with their new lungs is like no other they have ever experienced. I'm so very happy that finally Emily has had the chance to experience this.

I think we all know just how determined and focussed Emily is and I am sure that these qualities are going to be very significant over the coming days and weeks as she works on gradually getting her strength back and re-learning how to do all the things that she hasn't been able to do for so long. There may still be some tricky times ahead as recovery from an operation this huge takes months, but I know that with Emily's strength of character and zest for life, she will tackle every hurdle head on and with determination.

Even when Emily was struggling so much during the months before her transplant, she still managed to have plenty of inner bounce and sparkle. With a new pair of puffers I reckon there will be stopping her! I won't be able to see her for a few months unfortunately (due to cross-infection rules) but just knowing she has had her transplant and that she is now off the ventilator has already made my year, as it has done for so many other people.

Once again I'd like everyone to remember the family who gave Emily this gift and in doing so have given her life itself and a future. Emily, her family and friends can never thank them enough.

Thanks to everyone who has wished me well too. I had my operation this afternoon but was prepared to have a stand-up fight if I was prevented from getting to a computer to post this blog, seeing as I've waited two years to be able to pass on such positive news! I am doing fine though and will continue to update when there is more news. However I'm sure that as soon as Emily is a bit stronger and gets near to a computer she will be taking over the job again and I know we will all be so happy when that happens!

Monday, January 08, 2007

Apologies for updating rather late today but as I am in hospital myself, internet access has been made just a little tricky to say the least! However I have actually managed to negotiate my way to using the computer in the doctor's office on the ward late at night...purely on the strength of the fact that Emily's public need their regular updates on the pink princess' progress!

The team here actually know Emily very well as they looked after her CF care until a year or two ago and she went under the transplant list whilst she was still a patient here. They are all over the moon to hear she has finally got her transplant and I don't think could they possibly refuse to let me update on such a special ex-patient!

I don't really have much news to update on but Emily is doing well and things remain positive YAY! I think she has had a few problems but the staff have been keeping an eye on these and are looking after her fantastically well. She is not yet off the ventilator, but this is not at all uncommon at this stage and hopefully this will be removed in the next day or two.

Her family and A, as always, are total stars and I know that having them around her must be giving Emily so much strength and help. I'm joining everyone else in sending them and Emily all my love and am looking forward to hearing of continued positive progress over the next few days.

Emmie xxx

Sunday, January 07, 2007

Welcome to today's update on the special little lady who is clearly in the running for "World's Most Popular Small, Pink and Sparkly Person" YAY!!!

There isn't really any major news but then that is actually the best news at this stage I think! Basically Emily is continuing to make progress and things are still moving forward in the right direction. An attempt was made today to wean her off the ventilator but she is not quite ready for that yet, so is back on sedation. However she is increasingly alert and there are no major problems. The next big step will be getting off the ventilator in the next few days.

I have been receiving lots of requests for the address of where to send cards and gifts to Emily and after discussion with her family they have come up with the idea of having a fund for Emily that people can send money to if they wish, rather than sending gifts and flowers etc. Whilst it is lovely that people do want to send these things, because Emily knows so many hundreds of people, they simply can't cope with so many individual items. Also flowers are strictly banned in the transplant unit for health reasons.

The money given to Emily's fund can then be used by Emily when she has recovered to start doing all the things that she has longed to do for so long - special trips away, days out, new activities to test her new lungs with, etc. I am sure she will tell everyone all about what special things she is using the money for when she is back to full health.

Therefore please can we ask that people ONLY send cards/letters to Emily and that if they do wish to give a gift they send a cheque MADE OUT IN HER NAME to the CF Trust's address (below) which will be put in a special fund for her. This will mean so much to her and offer her so many opportunities during the recovery process and when she is better.

The address for cards and letters is:

Ward E,
Harefield Hospital,
Hill End Road,

The address for cheques (made out in Emily's name including her surname obviously!) is:

Rose Donnelly
Cystic Fibrosis Trust
11 London Road
Bromley Kent

Thanks once again to all of you for your messages of love and support for Emily and her loved ones. Her friends are also getting a lot of comfort from these messages during a tense time and before long the messages will also be being read by Emily too, so please keep them coming!

Emmie xxx

Saturday, January 06, 2007

Hi everyone, Emmie again! Here is today's update:

Emily is still doing well and the team are pleased with her current progress, which is very good news to all concerned. She is still heavily sedated although gradually becoming more awake but still on the ventilator, as would be expected at this stage.

There are a few issues that the team are keeping a very close eye on, just to ensure that they do not develop into more major problems. There are usually complications of different sorts as the body tries to adjust to what it has been through and it is important that these are closely monitored for any signs of further problems.

However, as things are currently, I would say that the outlook is cautiously optimistic. The next few days are crucial to her progress and I will update again when there is any particular news to report.

Friday, January 05, 2007

Hi everyone, it's Emmie here again.

I have had the pleasure of speaking to Emily's lovely other half this evening and have heard the latest updates on how things are progressing, so thought I would let you know how things are at the current time.

Emily's operation took 8 hours and involved a few difficulties but it essentially went well. She came out of theatre at about 6 am (UK time) on Friday morning after being in the operating theatre all night.

At this stage things are going ok but it is important to understand that whilst she has leaped a giant hurdle, it is still early days and there are many critical hours and days ahead before we can be confident about how Emily will come through the operation.

She is still on the ventilator and still heavily sedated, although she is occasionally able to open her eyes for a few seconds and smile before falling asleep again. Obviously the hospital team want to keep her sedated for now and not trying to communicate too much (anyone who knows Emily will understand that Emily never chooses to rest when she could be talking! )

I don't expect there to be any major news for the next day or two as the most important thing right now is that they ensure Emily continues to rest, that her body does not show any signs of rejecting the lungs and that she does not develop any infections, all of which are obviously possibilities.

Despite this obvious note of caution she has obviously come a huge way in the mere fact that she has come through the operation and now has her new healthy lungs in place. Over the next few days we hope that she will continue to keep making good progress and I will keep everyone informed of news as I have it.

Thank you all so much for your wonderful messages of love and support for Emily, her family, the donor family and also for me. Please know that all the thoughts and wishes are being read and are really helping Emily and all her family. xxxx
Here is an update from Emily's Uncle:

"We saw Emily, her Mum, Dad, A, and sisters in the ITU today and Emily is doing as well as anyone can hope at this stage. There's a long hard road ahead, and we must keep all our hopes and prayers for her coming.

Typically, Emily failed to understand the words 'heavy sedation' and defied medics this afternoon by opening her eyes widely, beaming a huge smile, and then chalking up a '1' in the air to signify a great step forward.

Her Mum, Dad, A and sisters thank everyone for their fantastic support and well wishes. A special mention to Rob who has been particularly inspirational to Emily!"

Emmie here with a quick update.....

Emily is out of theatre and all has gone well! Her family have seen her and she is looking peaceful and strong and they have been able to hold her hand.

This is one massive hurdle over with but the next few hours and days remain critical.

Please keep thinking of her and her family and sending them all your love and thoughts because it really does mean so much.

Emma xxxx

Thursday, January 04, 2007

Hi everyone, it's Emily's friend Emmie here. I hope Em doesn't mind me posting a quick blog entry, but I could see that people wanted to send their thoughts and messages to her on here, so I thought a separate new post would be a good idea. I know that Emily's sister will be updating with news as her family have it, so I'll keep this brief.

At about 9pm this evening (Thursday) Emily went into theatre for her double lung transplant. I spoke to her shortly beforehand and she seemed fairly calm and I was pleased to hear that she was sporting a gown that exposed her bottom which was being kept nice and warm by giant green paper pants (she is going to love me for writing that!)

She will be in theatre for all of the night I think, so please keep all your pinkest and sparkliest thoughts, wishes and love coming to her, her wonderful boyfriend and her special family. She is a true star and means the world to so many people. I think she is causing a huge amount of sleeplessness around the country tonight!

I think Emily would also want us to be thinking about another very important family right now....that of her donor. They are going through the worst time of their life and yet have been courageous and thoughtful beyond measure in choosing to allow their loved one's organs to give life to others. Thank you is not enough.

Right, that's all the news for now. As I say, Emily's sister will be updating from now on but please keep posting lots of messages of support to Emily and all her family, as they must be having a really worrying night tonight.

Love you Wemmit!

Emma xxxx

Wednesday, January 03, 2007

New Year’s Eve crept up on me a bit this year, I think perhaps because it didn’t take so much organisation and preparation, we were staying local, the party was to be held at my parents house meaning I could take super-turbo Claire and have high flow O2 all night if needs be, and lie down whenever needed, so no need to order loads of cylinders or anything like that.

The evening was brilliant, the drink flowed, food was plentiful, good music blaring and everyone was chatting merrily. Before I knew it, it was 11.55, and being nearest the TV I was handed the remote and told to turn up the volume just before midnight so we could hear Big Ben chime. I watched as a large digital timer counted down the final few minutes, and suddenly I felt heart begin to pound harder as I started (for some completely inexplicable reason) to panic. I think it was the very image of time passing in such a dramatic fashion, the countdown appearing to me to signify not “4 minutes till the new year” but more “4 minutes till the death of all that you know, that you have survived and is therefore safe” in melodramatic and tragic manner. Fighting the urge to throw myself Kamikaze-style at the TV and knock it over thus destroying this strange time-bomb sensation, the tears began to emerge. As quick as a flash A was sitting next to me holding my hand, and despite the terror continuing to flutter inside me I knew how stupid and farcical the whole thing was and sat smiling through my tears like a slightly mad old woman who sits in the corner stroking a stuffed cat. Even as Big Ben began to chime, the fear began to loosen its grip a little on my stomach, and I shook myself and joined in the pile of human hugs which was mounding in the middle of the room.

Five minutes of madness in a New Year’s Eve is not bad, and the rest of the evening was just fantastic. My lungs actually appeared to improve as the night went on, and come 3am I was still up with my sisters and their friends dancing in my own special way (which involves predominantly standing very still and swaying slightly to the music whilst mouthing the words and concentrating on slow breathing – it does not look as great as the skill required to master it).

Emmie and I got all enthusiastic on the 2nd and decided to have a business meeting which true to form involved blankets, pillows, sleeping and pizza. After my lungs had had a slight whinge which rendered me unable to do anything except breathe for a good hour or so, we ran through the various ideas, issues and notes we have floating around. Said meeting has geared us up for muchly campaigning and we are ready to throw ourselves with all our might. 2007 - bring it on!