A Compressed Angel. Trinitys Fight For Life

.🦓 🌞 👻 💞 LIVING LIFE 💞 👻 🌞 🦓


Hello there our Angels. We are here to apologize for the slowing of activity on this page.

However a year of trying to fundraise and being in the spotlight so to speak started to take its toll on both our girls and they found that they were losing sight of precious moments.

The angels better days were being spent focusing on trying to fundraise rather than actually being able to enjoy living in those moments.

They were starting to get a bit down and their number 1 rule of trying to keep a clear line between the severe health challenges and actually living life and finding any sense of normalcy in whatever ways possible was beginning to waver and blur.

That line is their line of self protection. It is what helps to keep them strong and it is those moments of normal that they have always fought for.

IV fluids, iron infusions, vitamin and mineral supplementation and the very small amounts of Jejunal feeding our Angel is managing is at least appearing to be helpful in slowing some of the decline for now, which actually buys us a bit more time to raise the rest of the funds to get her overseas.

How long this will last for, we have no idea, as the compressions still give her a lot of hell, she still vomits everything she eats,and it is a very fine balancing act with the enteral feeding to try and avoid her gut going on shutdown or starting to obstruct again, so she isn't anywhere near getting enough, but it is still more than what she had a year ago. So we are grateful.

Sadly, Health NZ hasn't come on board with support of her central line so we are still needing to privately fund all of that which certainly isn't budget friendly and has taken a bit of a chunk out of our funds. However she needs this line for her IV access, and making sure the girls are fully equipped to be able to do everything with the necessary care to avoid potential infections is imperative so we cannot skimp on that.

So for now, there are signs of summer finally arriving, there are hours here and there where the pain is reasonably manageable with the help of meds, and there is a bit of spare energy. So our girls are getting back to making the most of what our Angel is up to doing on any given day.

There are books to be read under a tree, there is a beach to walk along, there are family to spend time with, there is world news to be caught up on, there is a little bit of dancing to be done, the soul enriching time with Vinnie and of course precious time loving and laughing with friends, while also having the space to honor and grieve the loss of one of the Angels dearest friends.

It certainly isn't all day, and it sadly isn't every day, but it is something. Which is a hell of a lot better than nothing.

So while we are frightfully aware that we still need to find a way to raise the rest of the funds, just for now Anna is fighting her own exhaustion and needs a brain break plus time to enjoy being just a mum ( with a few extra tasks) and Trinity....well she is just going to keep being her beautiful self and fighting for every precious moment of joy and personal privacy she can find ❤️

Please stay with us, there will be future fundraisers and we will continue to keep you all updated as things progress.

We just all know that Germany is definitely not going to happen this year, but we have serious hopes of next year being the year of the Surgery that will save her life long term 🤞💞

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

🤯 💥 🤦‍♀️ THE GASLIGHTING 🤦‍♀️ 💥 🤯

Please note, we have removed a couple of paragraphs in Trinitys letter in respect to her privacy as well as the names of the Dr's involved, but this.....This is just one example of the attitudes she is faced with.

Trinity knows her body, she articulates clearly and precisely when given a chance, and if these Dr's were to actually listen to her, truly listen then she would not suffer through a lot of what she goes through. In fact, had they listened to her, had they actually examined her, had they run further investigations, the last surgery could very well have been avoided.

Below is email exchanges with her requesting help, the response she recieved and the outcome for her.

🩷 🦓 🩷 TRINITY 🩷 🦓 🩷

To .........

I have had some time to think over the things discussed in our recent meeting, and after a lot of consideration I would like to formally request being put back on TPN.

I did try to request this during the meeting, but I got frustrated at not being respected and listened to, once again walking into appointments to find that decisions have been made for me by complete strangers I have never met and without any regard for what I feel is best for me as the person trying to survive the nightmare that has been forced upon me.

My private specialists believe my enteral nutrition failed due to the multiple abdominal vascular compression syndromes which have been diagnosed with, on CT scan and confirmed by the expert Professor Scholbach in Dusseldorf. They do not believe I can recover enteral nutrition at my current weight and that my severe vitamin C and now vitamin A deficiencies are evidence of my nutritional failure.

I feel that Te Whatu Ora has chosen to watch me die rather than invest in offering vascular compression relieving surgery in New Zealand. Even if they will not ever provide this option, TPN could keep me alive and with a quality and enjoyable life as it has in the past.

My Dr does not believe I am fit enough to travel to Dusseldorf and recover well from surgery in my current nutritional state even if I could raise the money to buy this opportunity privately as others also suffering from AVCS have.'

It has been 18 months since I had my TPN ripped from me under false and untrue accusations, and had it done in such a way that I was denied all chances to defend or protect myself.

Since then, I tried so hard to get by with what I could tolerate on the jejunal feeding, but the resulting pain and vomiting seriously impacted on my quality of life, once again leaving me stuck in bed.

Then my tube broke on the 31st of July 2023 and I have been left with absolutely no support what so ever as I continue to try eating and drinking and hoping for any little improvement as well as very limited ability to absorb any of my medications, leaving me with little relief from my symptoms and requiring me to take higher doses for minimal relief.

There has been no improvements, things only continue to get worse, I am getting sicker and I am fearful of how much worse things will get if I don't get the IV nutritional support that enabled me to enjoy some quality of life for over 2 years.

I did hear you when you mentioned that long term TPN could potentially shorten my life by 8 years, however at this point I fear I won't make it to 25 without it.

I am also very aware of the risks involved with having a central line and understand very clearly the extreme level of care required to prevent and avoid infections. I am grateful in some ways to state that the only infections I have experienced in the past have occurred while being in hospital.

It took me a long time to come to terms with the prospect of requiring TPN long term, but since having it denied to me and trying to survive the outcomes of that, I have come to appreciate the value and quality it gave me.

For me, it is not a replacement for eating. I love food too much and I never stopped eating when I was on it before. What it did give me, was nutritional support as I continued to struggle to keep any food down.

This request is not being made lightly, I have thought about it a great deal and I strongly feel that this is my best option towards being able to have any quality of life.

I have tried an continue to try a large variety of foods and even liquid nutrition but the only thing I can keep down for any period of time is water, and even then I have to be mindful of how much I drink at one time and to stick to small amounts often.

What happened to me last year as a result of the Auckland teams false allegations and the resulting consequences on my life has been soul destroying.

I am terrified of that team and I do not want to have any further engagement with them. They are dangerous and put my health at serious risk. I also deeply fear our hospital. I hate the fact that I have to come in there when things go bad with my health and I fear what will be done to me.

All of this has cost me so much already, and it is costing me my hopes of a future.

I feel defeated and without hope, but I pray that you will give my request serious consideration and maybe find yourself willing to give me a chance at life.

Please think about the fact that it is not you that has to live with the consequences of your choices. It is me, you are not the one suffering at the negligence and abuse of our hospitals, it is me. It is not your life at risk as a result of others bad choices, it is mine. You mentioned the "do no harm" and yet in the past 18 months that is all I have experienced from the hospital system.

Sincerely
Trinity.

️ 🏥 Their response....please note that by the time that this exchange occurred Trinity had been treated for severe Scurvy with her Vitamin C level of a 1, normal ranges for a human is between 26-85.
💧️Her weight was also a result of the fluid retention that we had tried to tell them about, and when they finally re-hydrated her she was actually a mere 44kgs.
🍌 ️She had also required treatment for low potassium which both are likely to have been been a contributing factor of her seizures, and can also contribute to major heart issues.

⚠️ ☠️ ⚠️ THE DOCTORS ⚠️ ☠️ ⚠️

Dear Trinity,

Please allow me to reassure you that you are not dying and nor are you starving. Your chronic vomiting has recently resulted in isolated micronutrient deficiencies, namely Vitamin A and C deficiency but these deficiencies are easily treated without either PEJ feeding or TPN. As you know, we will be replacing the Vitamin A orally and the Vitamin C IV. Currently, at a weight of 52.9kg with a BMI of 19.4 you do not need PEJ feeding or TPN. We hear you when you say PEJ feeding made you uncomfortable in the past. Given that you do not want or need PEJ feeding currently shall we go ahead and remove the PEJ tube or would you still like it changed? If you feel you are never going to agree to PEJ feeding in the future, should it be required, then perhaps it is best if we simply remove it.

We will discuss alternative treatment options for your chronic vomiting at our next appointment with you.

Best wishes,
......

🚑 THREE DAYS LATER TRINITY WAS RUSHED INTO HOSPITAL WITH A MAJOR SMALL BOWEL OBSTRUCTION THAT HER SURGEON BELIEVES HAD BEEN THERE FOR QUITE SOME TIME 🚑

🛌 Post surgery was a battle of trying to beat nasty infections both in her small bowel and the surgical site.....WHICH HAD TO BE CUT REOPEN WHILE SHE WAS AWAKE AND IN HER BED. Her CRP was well up over 300 and we understand a result of likely perforation, a LIFE THREATENING MEDICAL EMERGENCY.

💉It took over a month of IV antibiotics before the infection finally seemed to clear. And a month of district nursing visits to look after the wound.

☎️Then to top it all off, she receives a phone call from her PRIVATE nutritionist informing her that he had been contacted by the Auckland team to discuss his treatment plan for her.....AFTER THEY HAD BEEN CONTACTED BY OUR HOSPITAL to discuss her case.

❓️Interestingly, (but we aren't surprised), when her nutritionist questioned them about the internal bleed where they falsely accused her of self harming, they did actually admit to no-one ever actually witnessing ANYTHING they accused her of.

💥 SO MUCH FOR THE RIGHTS OF THE PATIENTS THAT THEY ARE PROMISED

🤯 Also, just to show the absolute ludicrousness of it all....Trinity then recieved a call from ACC for a traumatic injury claim regarding the surgical infections so the HOSPITAL could get the cost of the District Nurses covered by them instead of it coming off their budget.

NO OFFERS OF SUPPORT FOR THE FACT THAT SHE NOW HAS ADDITIONAL SCARRING, NOR THE TRAUMA OF NEEDING TO HAVE HER SURGICAL WOUND CUT OPEN or FOR THE FACT THAT A TRAUMATIC SURGERY AND DIFFICULT RECOVERY COULD VERY POSSIBLY HAVE BEEN AVOIDED had she still been recieving her IV nutritional support.

We are weeks down the track from all of this, our Angel is still struggling to get even the smallest sustainability from the Enteral feeding, she is once again struggling with periods of crippling pain of what she feels is partial obstructions again, the Abdominal Vascular Compressions symptoms are ramping up and yet....she refuses to give up.

She uses her meds carefully and with a great deal of strategy so she can still spend what time she can with Vinnie. She has IV fluids which is certainly helping with the dehydration issues, and she still dreams of what life could potentially be like if we manage to get her to Germany as she clings to hope like a cowgirl on a broncing horse.

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

🏇 💞 🦓 A VERY HAPPY DAY 🦓 💞 🏇

💐🌻 We have all heard the saying "It takes a village" 🌻💐

Well we never fully realized the depths of truth in that simple phrase, and yet here we are living it in it's purest form.

Things on the health front are still extremely challenging and at times the top of the mountain seems unachievable. However our Angel is never one to just give up.

She gets frustrated and certainly has days where she struggles to see any light at the end of the tunnel, especially when she is already battling with obstructions again so soon after her surgery, and periods of suspected ischemia as well as the never ending grief from the AVCS.

The continued pain, vomiting and endless exhaustion is often hard to to battle through and is extremely disheartening for Trinity who is desperate to just feel better so she can live the life she so desperately wants.

So this is where the Village comes in. Her wonderful private medical team, her family, her friends, her coach and her sponsors and all of you here. All of you incredible Angels who understand that while we continue to try and fundraise, and while we try and find a way to get ontop of the malnutrition so she can be fit enough to travel overseas and withstand a massive surgery....the most important thing we can do is to keep her in the saddle as much as we can.

With the help of having IV fluids at home, last weeks iron infusion, and now a stress course of hydrocortisone for the next few days, our Angel and the beloved Vinnie actually got out to a competition today and did so incredibly well that they placed well in the classes they bravely entered in.

Our reality is, if it wasn't for all of your mind blowing support, today probably wouldn't have been a possibility. In fact any chances of any kind of life outside of her bedroom would be even more limited as her body continues to struggle.

Nothing these days is simple, none of it is in anyways easy, but sometimes the harder things get, we find we are building a much deeper appreciation for so many things that we all used to take for granted.

💞 So today has been a good day, a beautiful happy day for our girl. A stunningly successful day 💞

🥰 A day that all of you here have helped to make possible, and for that, we are so very very grateful 🥰

. 🩷 🦓 💜 ANGEL UPDATE 💜 🦓 🩷

The past couple of weeks have continued to be pretty rough for our Angel girl and despite the girls best efforts at home, things have continued to decline with ever worsening pain that Trinity recognizes as being very familiar to obstruction pain as well as extreme exhaustion on top of everything else.

The angels body likes to present us all with additional challenges of unusual presentations and the autonomic dysfunction makes relying on temperature readings a bit unreliable.

However blood tests and examination from her Dr last night has led to the conclusion that she is most likely still battling a recurrence of the gut infection she had post surgery so needs to start another course of antibiotics.

Something that fills our girl with a feeling of dread as antibiotics do have a tendency to really ramp up her nausea and vomiting, however we have fingers crossed that the gains will make it well worth it, and her wonderful GP who always does his best to minimize suffering has prescribed smaller doses more frequently in an attempt to make the side effects more manageable.

A possibility of an iron infusion further down the track, as well as sorting the prolapse which resulted from the distention and pressure in her gut, but first we need to get this infection cleared and see how things are looking from there.

By the grace of God, and the brilliant care from her GP and private specialists we have hope that our next update will be brought to you all from her beloved Vinnie who is patiently waiting in his paddock to be able to get into full work with his mum🤞❤️

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

💞🦓💞 BITTER OR BETTER 💞🦓💞

Olivia’s Broken Stomach , Thank you for continuing to speak out and fight.

You are inspiring and we are so proud of all you do.

please take a few minutes to listen to Olivia as she speaks out about her journey and the journey of many bringing tears to many Ministers eyes.

Olivia, as the Young Enterprise Student Ambassador gave a powerful speech recently at the NZ Business Hall of Fame in front of many powerful names in business as well as our Prime Minister and his colleagues.

Olivia spoke her truth, our truth, the truth of those before us. Her words incredibly articulated and thought out; the message clear. We are so proud of you Olivia and thank you for your commitment to changing the current narrative for people living in this country with these conditions.

Please take a small break in your day to watch Olivia humble some of the most powerful people in this country.

https://vimeo.com/youngentnz/nzbhof-olivia-adie?share=copy

🥰 🥰 EXTREME GRATITUDE 🥰 🥰

Our lovely friends at Refresh Clinic at EIT are at it again.

Running a delicious fundraiser for our Angel for the month of October, so please if you are in the HB area and feel like some scrummy pampering, follow the link and get booked in 🥰

https://www.facebook.com/share/p/PEjLhMcCrE47DZ9B/?mibextid=qi2Omg

🩷 Just $30.00 for an hour of luxury. 🩷

As Zalie correctly points out, our fight to get to Germany is only a result of the total lack of treatment and support from NZ Health.

Ultimately our Angel doesn't want to have to go through another major surgery that we have been told is high risk.

We don't want her to have to go through another major surgery if it can be avoided.

Her Dr's strongly suspect that her compressions are most likely a result of there now being excess room in her abdominal area due to having had parts of her bowel removed and therefore the reason why she is most symptomatic when upright and why weight gain to improve symptoms has not been effective in the past.

What we want, what our Angel wants, what all the families seeking to get overseas is for NZ to stop hiding behind psychological BS and start offering treatment and support that enables our kids to have some quality of life instead of gaslighting them and telling them it's all in their heads.

No-one chooses to live this life of endless suffering.

Trinity wants nothing to do with our hospital and experiences extreme distress when things get to the point where she has no choice but to go in.

Anna gets extremely anxious over what will happen to her child when they are left no choice but to go in.

They live with the reality and ramifications of Dr's having meetings behind closed doors, not actually listening to the patient and making decisions that have dire consequences before even meeting with the patient.


The consequences that Trinity has to suffer with. That Anna and our family have to suffer with, not the Drs who get to go home and live their regular lives, get sleep, eat and enjoy a quality of living that healthy people are blessed to take for granted.

Trinity and her mother live with the consequences of incorrect diagnosis and the lack of correct treatment as a result.

We believe this last surgery could have been prevented. Scans and tests that are over 2 years old were indicating the possibility of obstruction and we were told they were normal and that she just needs to eat. She could have ended up perforating, she could have died as a result but still they ignore what is clearly infront of them.

She had 2 weeks at home post surgery before things started turning sideways again. She is in near constant pain, the enteral feeding is failing her with the inability to up the volume and the return of obstruction pain and gut distention resulting in her stoma is now pr*****ed and she struggles to stay awake and get up and about.

This is the big problem with Adhesions, they do grow back. For some, they don't cause issues, for our Angel, they have been the cause of many issues in the past and we fear they are going to continue to be.

This road is terrifying.

This article and the realities of the attitudes we are still all facing here in NZ are heartbreaking and devastating and are a stark reminder that our public health system is unlikely to step up and help any time soon.

For now, our only hope pretty much lays in the care from Trinitys private specialist team who fight to do what they can for her here while we do all we can to get her overseas.

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

Kiwis with rare condition spend up to $200k for surgery overseas. Does it work? Patients say Ehlers-Danlos Syndrome surgery is life-changing. Experts not so sure.

💚🖊💚 PLEASE READ & SIGN 💚🖊💚

Hey everybody! My name’s Lucy, I’ve been a friend of Trinity’s for the last few years, through horses.
It is absolutely heartbreaking for me to see her health deteriorate, and to see the little aid she receives from our New Zealand health system.

Throughout everything, Trinity has always been the nicest person you ever did meet. She’s always been supportive and helpful, like helping me at my first dressage competitions and hacking my pony when I was otherwise engaged.

A core memory for me is when I fell off and got kicked in the face in 2020 while on a trail ride with Trinity; She leapt off her horse Nugget, left him standing alone and ran off to catch my pony for me. This is the kind of selfless person Trinity is.

It hurts to see her struggling with her failing health and missing out on being out riding and competing with us regularly. We met and bonded over our love of horses and shared dreams and it is sad watching her continuing to miss out when appropriate treatment from Health NZ could make such a difference.

This is why for my social studies social action internal at school I decided I wanted to do something in relation to EDS and AVCS; Something that I hope might help increase changes in Te Whatu Ora’s systems, but also that gives sufferers and their families some form of ‘compensation’ for the shocking lack of appropriate treatment they receive.

So, my project partner, Camille and I have,
a. emailed Hon Dr Shane Reti (NZ Minister of health) regarding the fast track of investigation and changes of EDS treatment, and
b. created a petition to parliament for Te Whatu Ora to make a public apology to families and sufferers of EDS.

While this doesn’t directly aid Trinity, my hope is this petition and email might assist in changes being made that in the long run will help all EDS sufferers and their families.

It would mean the world to us if you could sign our petition here - and invite all you know to do the same.
https://petitions.parliament.nz/85049eef-fe11-4b48-b5da-08dcc7c0361e

Thank you.

Lucy and Camille.

. 🧘‍♀️ RECOVERING AND BREATHING 🧘‍♀️

Hello our Angels, our apologies if our silence has caused any concern.

The girls have just needed time to focus on Trinity's recovery, and grieve the loss of one of the angels very dear friends who had a very big part in both their hearts and their journey 💔

There was a little freak accident which resulted in a fall when riding. Nothing major but with it being post surgery and Trinity having already had a very scary bleed after her last riding knock they decided to play it safe and rest her body and brain for a few days to let things settle again.

An appointment with a Neurologist has us all pretty confident that her seizures are most likely metabolic as a result of the malnutrition and unlikely to be epileptic which is a massive relief. An EEG referral has been requested just to confirm.

Her most recent bloodwork did show some improvements post surgery and we believe as a result of her short burst on TPN while in hospital, but we are frustrated to see many numbers back in the red zone.

While Trinity did have a couple of weeks enjoying feeling some improvement from the op, the past couple of weeks is showing strong indicators that the adhesions are growing back and once again the battle against obstructions returns.

Ultimately we strongly feel that her best chance would be IV nutrition with the ability to snack as she feels able. Combined with trickling the Enteral feed, (as she just cannot tolerate the amounts required to get enough nutrition to sustain her) just to keep her gut ticking over is her best chance of any quality here in NZ. But we know that's a fight still in progress.

For now though, it is time for our girls to have a chance to try and catch their breath and ease back into finding what level of life is manageable before we start on the next challenge of "where to from here and how"

Trinity has also asked that we pass on her heartfelt thanks for all the loving messages and comments of support. She truly appreciates you all here 💖

. 💐 🌺 🌷 RECOVERY LIFE 🌷 🌺 💐

Oh how we wish that we could tell you that it's all roses now since our Angel returned home post surgery with the enteral feeding.

Frustratingly it is not. Her pain and vomiting are increasing with each increase of volume of the feed and instead of gaining weight, she is once again losing.

However she is continuing on with it in hopes that she is at least absorbing a little of the feed to help support her bodies requirements. Like the girls say, anything at all is a hell of a lot more than what she had. Although we are all incredibly frustrated that TPN at home was denied as an option as we all know that is where her quality of life lays.

A trip to a new Osteo today to sort out a collarbone, shoulder and first rib that had chosen to relocate and she is feeling a bit freer in her ability to move which has enabled her to get creative with her IV pole. Cleverly turning it into an art piece instead of a clinical looking medical device in the middle of her bedroom.

While she has still been knocked out of the saddle, it hasn't stopped her from working towards riding again, slowly building up her strength with some gentle exercises and some lovely walks with Vinnie, and even stealing her friends dog to join her.

One thing about our Angel, it doesn't matter how many times she gets knocked down.....she always gets up again and keeps fighting for a future.

Germany is still our big goal once she is fit and well enough to withstand another major surgery so the fundraising continues.

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

. 💞 🦓 💞 ANGEL UPDATE 💞 🦓 💞

Day 14 and we are super happy to let you all know that our Angel girl finally achieved discharge today.

We are super grateful to say that it has been a pretty smooth process from admission, through the surgical process and recovery.

Sadly the eating side of things is no better with her weight starting to plummet with the vomiting as soon as she started to eat again, but she has been sent home with a functioning feeding tube through which the girls are trickling some enteral feed, and her body has been given a significant boost thanks to a week of TPN while she was there.

The dietician is hoping to get her up to 50mls per hour, however the fact that the pain and vomiting has already begun the girls are reluctant to try push things to fast and instead want to try just easing things up slowly in hopes that it may be more successful than previous attempts.

In the meantime they are just happy to have some form of nutritional support. As we all agree, something.....even a little, is a hell of a lot more than what she had before and for that we are grateful.

Trinity is just so happy to be home again, she absolutely loathes being in the hospital but also says that all the staff she dealt with during her stay were really lovely and at no stage was she made to feel unsafe, and the fact that they were so incredibly supportive of Rorys visits was just amazing.

For now, we are just going to focus on her continuing recovery process and slowly building up her energy levels and allow the wounds to heal more from where they had to open the scar to help clear the infections.

But she is home, and that in itself is a massive blessing not to be taken for granted.

. 💖 💖 💖 ANGEL UPDATE 💖 💖 💖

Well our girls famous 7 day turnaround after these kinds of surgeries certainly isn't going to plan and the past days have been particularly rough.

She is now having to fight intestinal infection plus also wound infection which will need to be opened up today to allow draining. Best described by the angel as it feels like her insides are ripping apart.

A massive 7kg weight loss as finally she is passing urine on a much more appropriate level of more than once a week showing that the fluid retention is finally starting to clear.

Much to the angels relief the NG came out this morning and already she is managing some sips of water without the excruciating pain in her throat that it was causing.

It has taken 3-4 bags of potassium over the past week but finally her levels are back within normal ranges freeing her of the 24hour ECG monitoring.

Our biggest celebration though, is the arrival of TPN which they have agreed to give her during this admission. First bag going up today. Something that will give her body a desperately needed boost and hopefully support a better recovery from the surgery and infections.

Also a special visit today from Baily the therapy dog who put the biggest smile on her face for a few days 🥰

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life