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Help Olivia eat again ... please help us fund for life saving medical treatment not available in NZ

  • 6 MONTHS POST OP 🫶🏻❤️🎉

      5 April 2024
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    On the 29th of March I turned 6 months & I cannot even describe how incredible it was celebrate the way I did. I went to Easter Camp, on the anniversary of my surgery I went to adrenaline forest. A confidence course, harnessed in 25m above ground walking over obstacles and zip lining. I only lasted less than an hour but it an incredible celebration of my life 2.0. Even though I was plagued with nausea, vomiting, pain & so many other symptoms over the weekend this would have been IMPOSSIBLE 6 months ago in fact it would have been impossible 2 weeks ago pre picc line. I was able to get adequate hydration and decent nutrition over the weekend which meant that I could go even though I spent so much time sleeping. The best part of it all was that I was able to celebrate 6 months with Taylor!This was a full circle moment from finding out about AVCS, to staying with her family over summer and being soooo unwell to going to a camp with her. While I am still SOOOO unwell & by no means 100% better, I am well and truly 100% better than I was 6 months ago and even 2 weeks ago.

    Medical devices while they have some huge issues are all steps towards life while we wait hoping my stomach will recover and my body will start to function better. we also know that if this is as good as it gets once I’ve got surgical tube options surgery will still be 100% worth it.

    Life is so worth fighting for & their hope + joy right around the corner of even some of the most hopeless feeling situations.

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  • Feeding tube awareness 2024

      11 February 2024

    Why do I still have a feeding tube ?

    This question has been the part of discussions around surgery that make it seem like a failure when it really is the opposite. Before surgery any feeding tube NGT or NJT we tried was excruciating, made me vomit terribly and left me with lip quivering, sobbing nausea. Feed was literally travelling back from my intestines in my stomach the wrong way?!

    So seeing me with a working tube now is actually a sign of huge success. Because to have a tube that works with no pain in the same way, less nausea, only vomiting due to other conditions I’d say is a pretty big win.

    Whilst I say all of this my feeding tube experiences have been pretty awful at times. I had my first ever tube placed in 2020 so 4 years ago for my bowel initially, since then I’ve had over 3,000 pieces of tube shoved down my nose (throwing up, up 6 times a day on an NGT every single day for over a year!), THIS year alone I’ve placed my own feeding tube 179 times! My nostrils are inflamed, swollen, bleed & can hardly handle a tube anymore yet I am dependant on this little plastic tube for my survival. We are hopeful for a better solution soon !

    But here’s to feeding tube awareness week 2024. Thank you to the tubes that have saved my life & continue to sustain my life, you’ve truly taken me from my worst to a place of semi stability.

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    • 12/02/2024 by Georgina

      Wonderful awareness piece on feeding tubes , good to highlight how uncomfortable they are normally, let alone when there are problems placing them. You are a fighter Olivia - keep fighting and you’ll get there . Any and all progress is a step in the right direction :)

  • Update on changes to page

      7 January 2024

    This is a formal update to let everyone know where we are at with the funds we've raised and the extension of this page.

    We have lowed the amount we are raising to 100,000 due to private donations we've gotten making the other 40,000.

    We are extending this page further as we have not raised all the funds to cover the Germany trip and I will have further ongoing costs in New Zealand.

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  • Page Update

      7 January 2024

    This is a formal update to let everyone know where we are at with the funds we've raised and the extension of this page.

    We have lowed the amount we are raising to 100,000 due to private donations we've gotten making the other 40,000.

    We are extending this page further as we have not raised all the funds to cover the Germany trip and I will have further ongoing costs in New Zealand.

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  • Update from home!

      5 December 2023
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    Being home has quite honestly been one of the best but hardest things I’ve ever done.

    I was removed from my reality, the medical system and life for over 2 months while I was away and truly that was a blessing.

    Coming home to the friends, family and a new kitten make it ohh so worth it but coming home to very broken medical system that still doesn’t believe or support me has been incredibly difficult.

    Coming home knowing I am still VERY sick has made it bittersweet.

    Since getting home I’ve started a few new medications for my nausea, POTS and bornavirus. In terms of my gastrointestinal issues this is a waiting game, giving surgery some more time to continue to help, letting my bornavirus be treated and then taking it step by step with the gastropareis.

    My NG tube is giving me the ability to as you can see spend time with some very precious people that I am so lucky to be able to call my friends, go back to church and attend events I never thought possible.

    Life is still very hard with lots of ups and downs, but it’s a life I am grateful I get to have at all. I’ve got an article with NZ Herald coming out soon and one with Women’s Weekly in January.

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    • 06/12/2023 by Susan

      Good on you Olivia. Nice to see you looking so well. Have a great Christmas!

  • Update !

      30 November 2023

    I am so so sorry for not updating this page! We have gotten caught up in the recovery and life in general in Germany and now back in New Zealand.

    Whilst in Germany we made sure to do a little bit of adventuring to help with my walking and recovery generally! We headed to Amsterdam for the day and also went back to Leipzig for more scans.

    My post op scans showed that all the compressions were decompressed, my kidney had stayed pinned and so much had improved!

    What remains is likely due to Gastroparesis, bornavirus, POTS, CRPS and of course EDS.

    Despite things not being perfect and my stomach still not working properly at all due to other conditions I now have a hope and a life !

    We have started a 3 month treatment for Bornavirus, some new POTS meds and other medications to try and manage symptoms.

    Being home has been amazing but hard. Amazing to see everyone and be getting back to life but hard to face those medical professionals that nearly let me die.

    Eating and drinking with and around others in my own small, different way is incredibly important and Meaningful to me!

    I will endeavour to do better at keeping you all up to date :)

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    • 01/12/2023 by Mike Crowl

      Just great to know you're doing well. I was alerted yesterday to the Facebook page - Olivia's Broken Stomach (nothing like stating the facts!) and it was good to see photos of you doing so much better. Will keep praying for you that things continue to improve.

    • 01/12/2023 by Julie

      Big hugs and strength to you Olivia, as you start your new treatments and face all your appointments back home xoxo Go easy on yourself (no apologies required in this space!), and enjoy eating and drinking with your loved ones. Merry Christmas xx

  • Post op checks

      20 October 2023
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    On Friday 13th I was discharged from Clinic Bel Etage after 14 days. On Monday I had post discharge blood work, ultrasound and Professor Sandmann took me out for ice cream. I have the upmost respect for Professor Sandmann for saving my life and doing so in such a humble manner. He truly is a life saver and one of a kind human being with the sweetest soul.

    Due to my infection from last week my feeding tube has had to be replaced so I got a few tube free few hours during ice cream without but it is now back in again to give me adequate nutritional support.

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    • 20/10/2023 by Robin

      How fantastic! you look so well and happy , Good luck with the rest of your journey, Robin 💕

    • 08/11/2023 by Mike Crowl

      How are things going with you now, Olivia? I hope there have been further improvements for you.

    • 01/12/2023 by John

      Hi Olivia, I note you mention scans -- people just say this in passing and it does not mean much to them if they have not had for example a CAT Scan, which can take an Hour or so -- with often a disclosure fluid injection through a line into your arm vein so they can better see the stomach

      organs such as the kidneys, etc. It is not a 5 minute job. Ulta Sound is a lot easier.

      That smile on your face eating an Ice Cream --made my day !!! ( 10th October )

  • 11 days post op ( 10th October)

      20 October 2023
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    Sorry we’ve taken SO long to give an update it has just been such a roller coaster ride. I was doing really well and then I got an infection, it has taken a few days to recover from that and is now under control. Yesterday my epidural and catheter were removed and I now only have a central line for feed and antibiotics. Other pain medication I’m taking orally (you read it right orally, I can drink and take pills without pain and vomiting). I have now managed very small portions of food.

    I also went to the mall today! We escaped and I managed to walk part of the way myself. Discharge is looking like Friday with stitches out on Thursday. I still have a lot of pain and vomiting as a result of the pain with heavy pain medication but I have a life again!

    Thank you for the out pouring of support we have had, you’ve all truly changed/saved my life!

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    • 20/10/2023 by Mike Crowl

      So good to see that big smile, and to hear that in spite of a setback or two things are going so well. Praise the Lord for the extraordinary ability of surgeons!

  • Surgery update

      2 October 2023
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    Olivia made it out of surgery okay a couple days ago okay! She is back in the room recovering from her anaesthetic. There were a few unexpected findings but he was able to manage those easily however her surgery did last a bit longer than anticipated. So now we start the process of recovery!

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    • 03/10/2023 by Robin

      Blessings and thoughts Olivia, also to Mum who walks beside you . Robin ❤️❤️

    • 03/10/2023 by Susan

      Well done Olivia! Sending healing thoughts your way. Take care, Sue

    • 18/10/2023 by Leanne Umbers

      Wishing you the very best in your recovery.❤️

  • Scans in Leipzig

      28 September 2023
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    We had our scans with Prof Scholbach who was absolutely lovely! He did my scans and took some blood to test for possible Bornavirus.

    He found:

    Median Arcuate Ligament Syndrome

    Extreme Wilkie syndrome or Super Mesenteric Artery Syndrome

    Extreme Nutcracker syndrome, with 3 collateral veins on the left side and 2 compressions of the renal vein

    Severe may thuner syndrome

    Severe lordosis

    Vena cava compression

    Serve dropping of both kidneys

    Severe pelvic congestion

    Postural Orthostatic Tachycardia Syndrome

    Disturbed duodenum peristalsis

    Now we head to Dusseldorf in the morning to check into the hospital for pre op admission before surgery on the 29th!

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    • 29/09/2023 by Mike Crowl

      Crikey, Olivia, you don't do things by halves! No wonder you've been so unwell. Praying that you'll have successful surgery and that everyone working for you will be as pleasant as Prof Scholbach.

    • 29/09/2023 by Robin

      God Bless you Olivia, Mia has had her op, you may see her when you go to the hospital. Keep the messages coming you are lovely in our thoughts , Robin ❤️

    • 29/09/2023 by Georgina

      Holy heck! You’re an absolute star for being able to put up with all of that, what inspiring strength. Sending you all the best healing vibes from NZ, and a massive thanks to the wonderful Prof Scholbach for his work. All the best for the operation - you’re an absolute fighter Oliver. Living with chronic illness is an incredibly tough thing - be super proud if yourself!

  • Travelling!

      25 September 2023
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    We flew from Dunedin to Auckland. The start of our big journey to Germany 🇩🇪

    The staff were amazing ! We got a row of 3 to ourselves despite it being a super full flight. We were also allowed 5 (overweight) carry on bags full of our medication, nj feeds, tubing sets and other medical equipment. As long as you are kind, have the correct documentation and allow plenty of extra time you’ll be fine with the accomodations you need ❤️

    We are flying to Dubai at 9pm tonight and then from Dubai to Frankfurt and Frankfurt to Leipzig arriving at 6pm on the 26th German time or 5am 27th New Zealand time.

    More updates to come ! We love and appreciate you all so much ❤️

    For for detailed and regular updates please refer to my Facebook page Olivia’s Broken Stomach

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    • 25/09/2023 by Bev-Ann

      Good luck Beautiful Girl , You got this !😊, safe travels look forward to updates.

    • 25/09/2023 by Robin

      The best of luck Olivia, our Granddaughter, Mia, had her op 3 days ago, in Germany . You will be in very professional hands. Cheers Robin

  • Dates for Germany!

      10 August 2023
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    Hi everyone!

    We wanted to say a HUGE thank you for the outpouring of support that we have received!

    We now have dates for our scans and surgery in Germany - we will fly to Germany on the 24th of September for scans on the 28th and then surgery is booked for the 3rd of October.

    Currently, we are still battling for any support around nutrition and hydration while we wait for Germany which is proving extremely unsuccessful.

    Thank you for you love, prayers and support it really does mean the world to us as a family ❤️

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    • 01/09/2023 by Mike Crowl

      Great the see that the amount is growing. I hope you get a lot more before you go to Germany.