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Help Taylor Eat Again

  • More than a year later! Here’s an update from a few weeks ago.

      2 June 2023
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    Today I’ve reflected on Taylors journey from the time she became unwell at the beginning of 2021 until now and it’s so hard to fully encompass what we’ve been through in a few well worded paragraphs.

    I think of her journey as seasons of time; the time she was in hosptial in NZ, the time we sought help from and went overseas for surgery and the time she’s spent in recovery. No season equal in its time but all equal in the impact it had on our lives both good and bad.

    Like seasons each period of time challenged us, forced us to be vulnerable, showed us just how strong we could be and motivated us to keep on keeping on... and that we will continue to do as we move into the season of advocacy, of seeking change in our healthcare system, of supporting others and raising awareness of Abdominal Vascular Compression Syndromes here in NZ.

    Today I’m not just celebrating Taylor. Today I celebrate everyone who’s impacted our journey along the way; our family, our friends, our fellow compression warriors, Professors Scholbach and Sandmann and the teams they work with and everyone who’s supported and encouraged us along the way.

    Our biggest appreciation will always be the people; we have met the most incredible people along this journey. People who have touched our hearts like never before, we love and appreciate you all endlessly.

    The two words I keep coming back to today are grateful and gift. To be healthy is a gift; one we are so grateful to have received.

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  • Overdue Update!

      11 April 2022
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    So sorry for the delayed update, I hope you've been following along on our Facebook page "Getting on Taylors Nerves" as we've posted a few there. BUT that is no excuse for not posting here too, sorry!

    Well surgery happened as planned on the 22nd and for all intesive purposes wen't really well. They located the compression which was very tight and significant and released the ligament allowing the artery to fill with blood.

    Taylor spent one rough night in ICU where she had some med reactions but settle quickly after they made a few changes. We spent 4 nights total in hospital and returned to our apartment for about a week until we left to return home on the 31st March. Unfortunately our trip home was more eventful than we'd like with Taylor loosing counciousness on the flight several times meaning we were grounded in Auckland and not able to return to Christchurch until she gained medical clearance the following day. The Dr's believe the pain meds she was on combined with her POTS and altitude made a perfect storm. She's hasn't passed out since so I think they were right.

    Since getting home I'm not going to lie it's been very up and down. Taylors had some positives since surgery but is still very much in acute recovery and still very sore and sick. The hope is that with time for nerves to heal this will all improve but the anxiety waiting is real.

    Postives so far:

    - She can finally take a full breath in and feels like she's breathing properly

    - Her right side pain has gone

    - She is bloating far less frequently and not a severely

    Still challenging

    - MALS specific pain still there and still increasing with food/fluid

    - Nausea is challenging

    - some surgical pain still

    - Fatigue still significant

    - Has developed some lower right abdominal pain which may/may not be related we will wait and see........

    Although it's hard not having an 'instant' fix we know this recovery is very long, and is referred to as a marathon not a sprint with time measured in months not weeks. We keep reminding ourselves that she had a very tight compression and nerves take a long time to heal!!!

    For now we try to do as much 'Normal' as we can, make every effort we can to support Taylors recovery and continue to be grateful for everyones contributions to getting Taylor this far!

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  • Surgery is all go for tomorrow!!!! EEEKKK

      21 March 2022
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    Well we met with Dr Yeo this morning to discuss the results of the Celiac Plexus Block and to discuss Taylors suitability for surgery. After what he himself described as an “interrogation” where he asked both Taylor and I the same thing in 50 different ways we all agreed that the block was a success. This confirms her diagnosis and means that he was confident in proceeding with surgery. We discussed the ins and outs of surgery and he has reassured me that after everything she’s been through, all the tests, procedures, medications, treatments etc and given her symptoms still that proceeding with surgery is the right thing to be doing now.

    So tomorrow Taylor is going in for a Laparoscopic Median Arcuate Ligament Release surgery and although I’m incredibly anxious about it (read below) I also have the upmost confidence in her surgeon and the decision we’ve all come to in agreeing to do this. There is a really decent chance this will go to plan and if it does it’s going to be worth even moment of anxiety that I’ve felt.

    Here’s some info…….

    - Although we are very hopeful they’ll be able to successfully complete the surgery laparoscopically there is a possibility it will need to be converted to an open surgery. As Taylor has had a Nissen Fundoplication previously (which he isn’t anticipating to cause any issues) he said his threshold to convert will be low slightly increasing the likelihood of this needing to happen. Around 1 in 10 Lap MALS surgery’s convert under normal circumstances so it’s not insignificant.

    - What he is going to do is cut away or release the ligament, nerves, fibres and surrounding tissue putting pressure on the Celiac Artery fully exposing it right back to the Aorta. I have attached an image which will hopefully make it a bit clearer.

    - While Taylor may very well experience some instant results he said the full effect of this operation will not be known for a while. Recovery is noted to being anywhere from 3-6 months and in some cases even up to a year. This operation may not relieve her of all her discomfort as she still has some non MALS pain and nausea etc that won’t be affected by this op. In saying that there is the hope that there is a knock on effect to other symptoms if we are able to relieve this pain. A successful surgery is one that reduces the amount of specific MALS pain Taylor feels.

    - There is a chance that surgery won’t work, or even make things worse.

    - Surgery will take 2 - 4 Hours - I will pace a hole in the hallway…. Send valium!

    - She will be in hospital for a few days afterwards all going well, longer if complications arise or it is converted to open.

    - As they are cutting away tissue right on an artery and right back to her aorta one of the biggest risks is damage to either causing bleeding, the most common reason this surgery converts from lap to open.

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  • One week down

      7 March 2022
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    Well tomorrow marks a full week down in our trip and we’re on the countdown to Taylors plexus block which is only 8 sleeps away!

    We had a Telehealth appointment with Dr Yeo this morning where we discussed a few aspects about surgery if it is to happen. At present it’s not guaranteed but as the timeframe between the plexus block and her current surgery date is only 5 days I wanted to cover some questions now so I have time to process the information and make some decisions.

    First up though is this block and Dr Yeo really enforced today that once done Taylor needs to put it to the test and do all the things that would normal increase her nausea and pain so her first stop post procedure will be somewhere like McDonalds I’m sure!

    We see him in person on the 18th to discuss the results and make the decision about if we proceed to surgery.

    Taylors had a few really rough days/nights this last week but we managed to get to the beach for some salt air and sunshine which was cool! Taylor braved the water and I sat on the beach completely overdressed in jeans and not the standard beach attire👙

    I’d also like to say another massive thank you for the fundraising effort that has been happening in our absence, the auction on Hoops on Air, Hampstead Housie, personal donations and of course the Givealittle has really exceeded our expectations. As we’re running off estimates that could change we really are so so appreciative of the small buffer we have as it takes the stress away so much!

    Here’s a pic our our girl enjoying the beach!

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  • What a week!

      28 February 2022
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    🎢✈️🇦🇺

    Well what a week we’ve had, it’s been full of ups and downs and the emotions have been running high. As you know we had plans to get over to Sydney asap and isolate until Taylors appointments. Then the hubby got a positive Covid test, then we were waiting test results actually hoping they were positve to let us leave on time to arrive at the last possible moment.

    Well our rollercoaster dictated the events as per and Taylor and I have produced 2 Negative results each on days 3 and 9 soooooo WE’RE LEAVING IN THE MORNING!

    Feel like we’re back to plan B or C after a wee detour of plans X,Y and Z 😳

    Best get packing………

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    • 01/03/2022 by Gay

      All the very best with the examinations, tests and treatments going forward . Thinking of you .

      Regards, Gay and Dave

  • A few steps forward - 1 step back.....

      26 February 2022
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    Well we've had an eventful week with lots of amazing progress to getting Taylor to Sydney and one reasonable step back, or maybe not......

    Progress made this week has included confirming all appointments for the trip, passports arriving, flights being booked and accomodation sorted! Taylor was also a feature story in our local newspaper this weekend! Our community truly is the best and has got behind our bid to get Taylor overseas. Her school is running a mufti day, there's an auction on our local radio stations Facebook page (Hoops on Air) and the local Housie group is running a fundraiser next weekend too. We're just so grateful to everyone for their donations, kindness and support no matter how big or small!

    So that brings me to our 1 step back..... Covid.... more specifically Taylors dad has tested positive for Covid! We are currently in isolation awaiting our test results to see who else in the house is positive. What that means for Taylor and us getting to Sydney really depends on what results come back.... the possible scenarios are as follows.

    Best result - Swab is Positive for both Taylor and I we are able to still leave on the 8th as planned as our isolation is over and we're symptoms free.

    Next Best situation result is Negative we re-test day 8 and thats also negative then we're released from Isolation with my husband and can leave tuesday

    Worst case scenario test is Negative but we then test positive at the next test, in that situation our isolation period starts again meaning we won’t make it to Sydney before the 8th. As we need to be in Sydney a full 7 days prior to her first appointment on the 16th to meet their entry requirements we will have to reschedule everything.... lets hope this isn't the case!

    We are all feeling ok, the odd mild symptom but nothing serious as yet. Taste has been funny, a bit achy, slight cough and congestion and the odd headache.

    I'll be sure to update once the results are in.... cross your fingers it's positive (can not believe I'm saying that!

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  • Plexus Block and Surgery Date received

      18 February 2022

    👉🏻 URGENT UPDATE 👈🏻

    We’ve just had awesome news! The referal

    for the plexus block has been done for the 16th of March and surgery is pencilled for the 22nd 😱 Ekkkk about a month sooner than expected!

    What this means though is we need have way less time to get ourselves sorted. On top of that I was informed last night that we need to be in Sydney for a full 7 days before we can electively access any health care facilities.

    All that on top of NZ’s departure requirements means Taylor and I need to be ready to go from about March the 4th!

    So we have about 2 weeks to get the rest of our funds together! We’re currently at 17K so only 17 more to go 😬😬😬😬

    Please heap us by sharing our givealittle page far and wide 🙏🏻

    Forever Grateful Zalie, Karl and Taylor xxxx

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  • Gratitude

      13 February 2022
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    Gratitude is something we practice as a family and something Taylor and I have put alot of energy into since she got sick.

    I got us both gratitude journals early on in her first few hospital admissions as a way to keep ourselves accountable to all the good things surrounding us at a time where nothing seemed to be going right. We don't write in them every day but when we do they always make a bad day better. Gratitude allows us to see the positives that have come from such a difficult time and appreciate the little things in life that would otherwise pass us by.

    To wake up this morning and find our give a little page is almost 1/3 of the way to it's goal in only 2 short days has humbled and overwhelmed our family more than words can express. To have friends, family and strangers support our girl so wholeheartedly and sincerely is something our family will be forever grateful for.

    I was expressing how 'lucky' Taylor was at work on Friday to have so much love shown to her and was bluntly reminded by my colleague that she's not lucky at all! To be her dealing with what she is is really dam unlucky. So instead I will say she is very blessed, blessed to be so loved by so many. Thanks will never be enough for what you are all collectively doing for us.

    Taylor is a phenomenal young lady and I know as her mother I'm biased but she really is! She brings light and laughter to any room with her big smile and quirky sense of humour. She shows kindness, compassion and acceptance of everyone always making friends everywhere she goes. She is outgoing by nature, confident in herself and always up for challenging herself or supporting others to do the same.

    She is worth this fight, she's worth the uncomfortableness of putting our hands out for help, she is worth the chance of good health... thank you for seeing her worth.

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