30/12/2018 Important News update about Sarah

Hi folks, there is an important update from Sarah Gearing on the SurvivalSurgery4Sarah campaign page. She had to fly out to Barcelona at short notice for the completion of her surgery and the timing became urgent because, quite literally, she has a screw loose! Essentially this brings forward the need for her completion surgery so this can be corrected and Sarah’s spinal fusion can be finished. Please see the post on the public campaign page for full details and like and share from there as we need to make the post as active as possible so it circulates.
Sarah, we are all rooting for you. More updates will be posted as they become available, Sarah thanks you all for your continued support.

09/11/2018 One year on - Sarah's own words

Exactly one year ago Sarah had her life-saving surgery. Here is her thanks to all who supported her, in her own words:

So, here I am, exactly one year on from the day I had my life saving brain and spinal surgery in Barcelona - all thanks to the overwhelming generosity and hard work of all my supporters from around the world! How do I begin to say THANK YOU for giving me my life back? As I reflect on this time last year, preparing to face the biggest moment of my life, I see how far I have come.
It hasn't been an easy ride and my recovery has been hard work and is ongoing.
There have been SO many improvements to my quality of life (apart from still being alive!) such as clearer vision, no longer am I looking through "fog", or have the crippling pressure in my head that would leave me confined to my bed for much of my time, unable to speak and having seizures. My gastric failure has improved so much in the last 2 months that I now weigh 7 and half stone (48kg). This time last year my weight was considered critically low at just over 6 stone (42kg) - what a difference! I am so much healthier and have more energy.
In Sept I was able to enjoy celebrating my mum's 80th birthday with my family. Without your help and this surgery, I was not expected to be here to see my own mother turn 80. I can't describe how it felt, feels, to be alive. I am able to take my faithful Assistance Dog Otto out for his walks instead of relying on others to take him out. Last weekend my boyfriend David took me to a fireworks display, the first I have been able to go to in years. Before, the pressure in my head was too severe for me to stand the noise, I was simply far to unwell to be out for an evening like that.
One picture shows me and David with the hedgehog David won at one of the fair stands. Otto has adopted it and I have deliberately unoriginally named it "Spike". I had tears in my eyes as I watched the fabulous display of fireworks explode in the sky, how my life has changed! It still blows me away that we managed to raise £130,000 in just 6 weeks. I thank God and all of you more than I could ever say. Look out for some upcoming posts from me for more about how my life has changed and what my next steps are, as I prepare to have my one year on scans, watch this space! x

13/01/2018 BIG NEWS! Sarah is home!

We are delighted to announce that Sarah was declared fit to travel home by her doctors and has come home, arriving back in the UK late last night. Nearly three months ago she left home for Spain not knowing how long she would be away, or indeed if she would survive to make it home at all. The smiles all round say it all, and she was so happy to see David again. Thanks go to easyJet and Southend Airport for their support and assistance in bringing Sarah and her two carers home. 

As you know, Sarah's story is not over yet, please continue to provide your support as we seek to fundraise for the final surgery needed to complete Sarah's neck fusion later this year. 

Sarah, your friends and supporters wish you well as you recover, rest and settle back into life at home. We kindly request that friends who know Sarah are patient and give her space and time as she does so, she will let people know when she is ready to communicate and see people again. Thank you to everyone for your support.

21/12/2017 Positive News and Christmas Good Wishes

I am delighted to say that I am making real progress! Yesterday I was sat up in my wheelchair for 45mins, today managed an hour. I am now off the TPN IV nutrition, in fact My central line was taken out today. I am still on antibiotics etc orally and still have catheter in but my recovery is all moving in the right direction now, onwards and upwards! Don’t worry I’m only doing what the drs tell me to, won’t push it. its hard work but I’m getting there. Thank you all for your continued support and prayers, also donations. The extra costs of my extended hospital stay and extra care need to be covered. I can’t wait to be back home as soon as I can. In the meantime, have a wonderful Christmas or whatever this time of year means to you and your loved ones. I wish you happiness, peace and love xxx

12/12/2017 Staying Put to get Stronger

Hi everyone, I’ve been battling to keep things down due to nausea from my antibiotics. So this evening they have started me on TPN which is IV nutrition. This will help me gain some weight and some strength back. My body is recovering from major surgery and infection and just needs this boost. I would appreciate all your prayers and support that I respond well and quickl. my body was so poorly it took a hammering going ahead with the surgery but I knew it was my only chance to survive and so despite knowing that the road would be rough, I chose to live. My recovery is a little slower than expected but I will get there. Your love and support carry me through and I can’t thank everyone enough. I will keep fighting and although I now won’t make it home for Christmas, I can’t wait to show you all the amazing results of my surgery. Not only has it saved my life but my quality of life will be so much better and i have you all to thank for that. i know that with Gods grace and your love I can do this, time to kick ass zebra style! Love to you all xxxx💕

08/12/2017 Friends Arrive

A visit from friends and another surgical procedure

A couple of days after my brother Jon left I have enjoyed having two good friends visit me yesterday and today, it has been really good to see them as my recovery can feel like a long road.

Unfortunately I have had a CSF (cerebral spinal fluid) leak these past couple of days, which has been giving me some problems, and have been told there are still traces of wound infection, but this time lower down. In addition, I have had an abscess developing on the back of my head as a result of so much time lying on my back, even though I am moved onto my side at regular intervals. As a result they are taking me back to theatre this afternoon to deal with all three issues at the same time - stopping the CSF leak and replenishing spinal fluids, flushing out and treating the wound infection, and treating the abscess.

I don’t therefore expect to be online much immediately following this, but please do pray that all goes well. I am hoping the procedures I’m having will deal effectively with all these issues.

Thank you to you all for your support as always - onwards and upwards!

Update:

The news from Sarah's carer as of this evening is that things have gone well and she is spending the night under observation in ICU and all being well should be back on the ward tomorrow.

04/12/2017 Jon Heads Home

It’s a long road recovering from such a major operation. After a few good days, Sarah hasn’t been feeling so well today and has spent it resting.

I’m heading home to Australia tomorrow morning, so this is my last post from Barcelona and I will settle back into checking here for updates. It’s been really special to spend this time with Sarah, and to be with her as she recovers in hospital. And despite the circumstances it’s been nice to have time to talk and catch up.

On Thursday Sarah’s good friends Sara and Bev are making a flying visit, and she’s really looking forward to that 🙂

02/12/2017 Sarah sits up in her wheelchair

This from Sarah this morning, along with a

photo of her celebrating with the man who

saved her life, Dr Gilete: "Guess what folks

They’ve got me up in my wheelchair for an

hour!!  This is huge step in my recovery, and   

so far I am tolerating it well. A great    

achievement for me!"

01/12/2017 A Day of progress

Another day of good progress as Sarah recovers from surgery. This afternoon she’s been allowed to sit up in bed, and she can turn over to sleep more comfortably tonight. Her hand is also gradually improving with physio.

Sarah is continuing to stay strong and positive, and is being very well looked after by everyone at the hospital :-)

30/11/2017 Another good day

An update from Jon

Sarah had another good day today. The doctors are pleased with how she’s doing but she still has to lie flat all day.

The doctors, nurses and all the hospital staff are brilliant. They are so attentive and knowledgeable, and that’s meant they’ve been right on top of everything. She is being kept comfortable and it’s all helping her feel her positive self.

Sarah knows there are a lot of you following this blog, thinking of her and praying for her. That means a great deal to her!

29/11/2017 Sarah's getting better

Update from Jon her Brother

Sarah has had a good day today. She’s feeling well and was chatty all the time I was with her this afternoon. She’s feeling well enough to be fed up of lying on her back and banned from using any devices 😉 It’s great to be able to spend some time with her this week, and great to see her gradually improving.

27/11/2017 update from Sarah's Brother Jon

I’m in Barcelona with Sarah for a week 🙂

It’s early days but the improvement after the surgery is encouraging. She is swallowing more easily (and managing double the nutrition she was before the op), feeling more coherent and not having the head pain she used to. It’s noticeable how much better her speech is too.

Sarah’s recovery from having surgery is slow though, and she has had some complications due to her EDS and generally fragile state. As she said in her last post, she had an infection that needed to be cleaned up surgically. She’s now on IV antibiotics for a couple of weeks and it looks like it’s clearing up well. She also has a small leak of spinal fluid in her lower spine - not as bad as it sounds, but it means she has to stay in hospital while that heals. She has to lie flat for at least the next 4 days because of it, so still isn’t managing to do much on Facebook.

All that sounds worse than it is. Overall Sarah is doing well. She’s in good spirits and much improved from before. The doctors are really pleased with the outcome, it’s just a case of recovering from the operation.

Thank you so much to everyone who is supporting, praying and wishing Sarah well. It means such a lot to her, and although she’s out of touch it’s cheering her up a lot to think of all the love that’s coming from back home and around the world.

Click Video To Play

20/11/2017 A setback but also good news

Today Sarah explains she is disappointed to be on antibiotics to fight an infection in her wound. However, she is able to show us that movement and function is being restored to her weakened right arm which had been giving cause for concern. She thanks everyone for their prayers and good wishes as she walks this journey of recovery.

Click To Play

16/11/2017 1 week after Surgery

Sarah describes her ongoing recovery one week after her life-changing surgery. She is preparing to attempt sitting in her wheelchair for the first time since the operation and is finding recovery long and not without problems, but is enjoying having her neck feel stable and being clear-headed in the mornings.

Click Video To Play

15/11/2017 Day 6 Sarah tells us how it is!

Sarah sends this video to 'tell it like it is' and encourage others in her position or facing different kinds of major surgery. Recovery is a step-by-step journey, and it's important to be real about what is behind the smiling recovery photos.

Click To Play

14/11/2017 Day 5 Feeling Positive

Sarah is feeling upbeat today and says her peripheral vision has not only improved but she no longer has pain with eye movement. She has been having some good rest, starting to eat a little better, and has been enjoying the view from her third-floor window. Her mother has sent her a letter or card to open on each day of her time away, and Sarah particularly enjoyed today's.

Click To Play Video

Click To Play Video

13/11/2017 4 Days post Surgery

Sarah reports she is resting and enjoying some physical benefits from her surgery already. In particular, her neck is stable and in a much better position, the scaffolding is working as it should and there is no further need for her external neck brace. She thanks everyone for all their support.

Click Video To Play

12/11/2017 ..3 Days Post Surgery

Sarah has managed a short piece to camera from the recovery ward today. David says it has been an intense couple of days, but Sarah is feeling very positive. In summary, she is benefiting already from instant relief from the intense pressure in her head and the sight in her left eye has dramatically improved. There has been some concern over movement and sensation in her right arm which the doctors are currently investigating (they removed Sarah's surgical halo to enable her to have some scans). 

On behalf of all your friends and supporters everyone at the Surgery4Sarah campaign team wishes you well, Sarah, and we look forward to more good news in the days and weeks ahead.

Click Video To Play

10/11/2017 SARAH UPDATE, 10 Nov: Day After Surgery

We are pleased to report that Sarah is now awake and on the path to a good recovery. Her breathing tubes are out and she is talking, with a little difficulty. She is still heavily sedated but in her own words is ‘compos mentis’ and can recall factual details. Early indications with regard to her nerve pathways seem good. She will be moved out of ICU onto a recovery ward this evening. Sarah would want us all to thank you for your care and concern, and her campaign team ask all who have supported her this far to consider how you may be able to support our continued fundraising. We look forward to sharing more in the coming days and weeks. 

Thank you all.

09/11/2017 Life-Saving Surgery Day- UPDATED

Posted on Sarah's behalf by Sara Millington: 

Life-Saving Surgery Day

Sarah went into surgery at 8am this morning feeling at peace and knowing she is in the best possible hands. She even started the day with a giggle with Dr Oliver and Dr Gilete, the two neurosurgeons who are operating on her today. Dr Oliver seemed to have a little trouble with the 'V-for-victory' sign... perhaps a thumbs up is best!

Sarah's boyfriend David, good friend Fiona and her carer Sue have been with her during this time and will update us with news as they have it. She managed one last video message for us all just prior to surgery, which is posted below.

Click Video To Play

SARAH IS OUT OF SURGERY!

The SurvivalSurgery4Sarah campaign team are absolutely delighted to report that Sarah’s surgery finished earlier than expected, and Dr Gilete has said it went well. David received a call at 6.30pm UK time summoning him to the hospital and he arrived to see Sarah’s anaesthetist leaving with a big smile, which was the first indication of good news.

We are told the neck fusion and spinal cord untethering went well.

Sarah is currently in ICU, in a temporary induced coma. David has been told she will be brought round at some point in the course of tomorrow, at which point doctors will be able to assess her and carefully monitor her recovery. It is expected her breathing tubes will be out tomorrow, and they have said her halo could be removed as early as Monday.

There are a lot of unknowns at the moment, as everything is ‘wait and see’ with regard to how Sarah’s body settles down and recovers from this initial fusion. At the moment it looks as though the additional surgery will not be planned to run concurrently with this procedure, so if Sarah doesn’t encounter complications and recovers well then we are hopeful she will be home in time for Christmas.
In summary, the immediate life-saving element of Sarah’s surgery has been completed, and it is the generosity of everyone’s support that has made that possible. For now, we celebrate good news and are grateful to God, Sarah’s family and friends, and all near and far who have supported her to get to this point. We look forward to providing more updates in the coming days.