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.

08/11/2017 Tomorrow is the big day!

Tomorrow is the big day!

Today I have been recovering from my halo (brace) fitting and am preparing myself for the neck and skull fusion tomorrow, which is likely to be a 16-hour procedure (8am to midnight Spanish time). 

I am already experiencing benefits, particularly with my swallowing and breathing, from having my spine held in a corrective position by the brace, and I am hopeful that this is a good sign of things to come once the surgery is complete. 

It is an amazing achievement, a testimony to everyone's generosity and hard work, that we have raised the £130,000 needed for this surgery, and I thank each and every one of you who have supported me. Unfortunately following specialist scans this morning I had the unexpected news that I will need further, more extensive fusions on my spine in a second procedure. This will incur a large additional expense, so the fundraising will need to continue for a while yet. 

Thank you to all who are supporting me, praying for me and sending their love and best wishes. My campaign team will keep you updated until I am out of intensive care and well enough to speak to you again in person. 

Thank you for everything and God bless you all.

Click Video To Play

07/11/2017 Halo fitting day

Halo fitting day
Posted on Sarah's behalf by Sara Millington: 

Today was the second biggest of Sarah's big days. She had tohave the fitting of her external head and neck brace, known as a 'halo', whichstabilises everything prior to and for the surgery. This is a tricky procedurewhich Sarah had not been looking forward to as it involves drilling into herskull in four places whilst she remains fully conscious in order to givevaluable feedback and ensure safety as the doctors position thingscorrectly. 

Sarah's faced this with incredible bravery, strengthened I'm sure by the prayers and good wishes of her family and friends. I am happy to say she is out the other side, and David posted a great selfie of them both on her Facebook page this afternoon. 

Sarah will spend tomorrow recovering and being prepared for her three-stage surgical procedure on Thursday which will begin at 8am.

Video Click to Play

 

06/11/2017 The Day Before Halo

I'm bracing myself for my brace! Tomorrow is the fitting of my surgical 'halo' that will stabilise my skull and neck and allow the doctors to find the correct position for the fusion surgery. Hoping for good sleep tonight as I have an early start at the hospital in the morning.
I have spent this evening being so grateful for everyone's generosity - their financial contributions to make this possible, and their love and prayers. I know I won't be able to update you much myself after tomorrow but David will send some updates through on my behalf.

 Thank you all.

Click Video to Play

05/11/2017..Meeting with Friends

I hope you are all having a lovely time back home with fireworks parties and bonfire night happening. I love fireworks and am sorry to be missing them this year. I haven't been feeling good today but I was able to meet up with a friend here who is in recovery from having a similar spinal fusion procedure with Dr Gilete, my neurosurgeon. She is recovering well which is really encouraging to see, although I learned a lot about the costs of the expensive medications needed post-surgery for pain relief and am extremely grateful to all of you who are still going with the fundraising. I am meeting with my anesthetist tomorrow and having my 'halo' fixed head brace fitted on Tuesday. Here is my video blog entry for today. 

Click Video To Play

04/11/2017 Settling In

Hello everyone. I have been concentrating on resting this weekend and settling in to my accommodation near the hospital in Barcelona prior to the beginning of lots of medical appointments and procedures early next week. Here is a video blog entry for today. 

Click Video To Play

02/11/2017 Relaxing

Today I managed to get up at 3pm and was feeling much better. I even managed to take a dip in the lovely hydrotherapy pool! So amazing to feel free in the warm water, it's kept at 35degrees. So good for the pain in my muscles. At home I can't use the pools as the lower temperature puts me into autonomic shock and I am allergic to the dye and chlorine used. This pool is salt water, perfect!
Feeling stronger, onwards and upwards xx

Video..Click Picture to Play

01/11/2017 Non Eventful Day

Hi everyone! Today has been a non event, I have just managed to get out of bed at 7pm and not seen the light of day. The flight was really good but I underestimated how much it had still taken out of me! Being in a different place also throws it curve balls with my limited field of vision, keep bumping into everything! I was able to see my friend and her daughter who is recovering from surgery and staying at the same place as me, so great to see them again! Thanks so much for all your well wishes and continued hard work with fundraising. I will chat to you all tomorrow when I'm feeling a little better. Bye for now, or should that be adios amigos

Sarah's Video Update

Click to Play Video

27/10/2017 Feeling Tired

I'm doing remarkably well considering but I am feeling tired and each day is a reminder that I desperately need this surgery. Today I battled to manipulate the mouse pad on my laptop. With no feeling in my fingertips it is difficult to do simple things like that. The last few nights I've been up with sickness throughout the night only settling in bed at 5.30am. I can feel myself getting weaker. You'd never guess it from my smiling photos during the few hours I am able to function more. Fluid released from the pressure in my head ran down my throat into my chest again but I managed to cough it up this time. Hoping for a better night, onwards and upwards!

10/10/2017 Snapshot

To give you a snapshot of life right now, it takes me a lot longer to do things and I have much less ‘functioning’ time per day. Yesterday I only managed to be out of bed at 7pm, today at 5pm. I am dislocating joints more easily, especially in my neck, even with wearing my neck brace. It's not easy constantly adjusting to how pain, increase in seizures, etc, is affecting my day-to-day life. Some days my sight is too poor for me to check any of my messages, or I am wiped out in bed with the terrible pressure in my head, unable to function at all. Other days, like today, are mixed. I was rough and in bed till 5pm but within an hour of being able to be up, I managed a walk with Otty and then later in the evening was able to visit my church youth group and say hi (they're busy fundraising for me). A few hours later and I was rough again... It's a mixed bag and the ‘good’ hours I have are becoming more few and far between, but I am very grateful for them. :)

09/10/2017 Update from Home

Hi everyone, just thought I'd let you all know how I am doing. My brother Jon and family have been visiting from Australia, they've now gone back. I only see them once a year and I treasure any time I get to spend with them but my current health had quite an impact on the visit this time. I just wasn't able to be up and about to spend as much time with my gorgeous two nephews as I would have liked. All the time spent unwell in bed, too poorly to be up or having to rest, was disappointing and a reminder of how much things have changed. A short trip to the local park round the corner with the boys and my lovely assistance dog Otto was managed only twice and that took it out of me, but was well worth it. It's a far cry from their visit last year when I was able to go out with them every day and took the boys bowling, to Adventure Island, visited parks and the woods, indoor play centres, etc. But the boys were fantastic and it was a joy to watch them playing games, making puppets etc, still quality time :)