Updates: Give The Gift Of Life To Maddie

Cause page created in the Health category by Sarah Collins

  • $131,820.58 donated
  • 2,363 generous donors
  • Update for Maddie October 2016     09 November 2016
    Main image

    Update for Maddie October 2016

    Maddie desperately needs a life-saving kidney transplant sooner rather than later which unfortunately is not likely to be available in New Zealand in the next 10 years because of all the critieria and the long waiting list for a transplant here. For Maddie to survive it is critical that she gets a transplant very soon and her best chance of that would most probably be in America but at the cost of $350,000.

    Maddie is very unwell at the moment and is back in Starship hospital. The ongoing challenges the family face in Christchurch are huge as no one in paediatrics is trained to help with dialysis for children and so the responsibility for Maddie’s care falls on her parents.

    The dialysis machines continually break down and then they have to wait on another one to arrive from Auckland. They set off very loud alarms several times throughout the night which interrupts the whole families sleep and for Maddie’s Mum, Sarah, it means she is up most of the night which have other consequences for Sarah who herself has had breast cancer and suffers with reoccuring problems that are a side effect from chemotherapy.

    Sarah says, at Starship they are looking at new plans for Maddie's care - but until we get her well and strong enough most will need to wait.

    The first plan is to treat the bug she has at present which is an ongoing problem as she is constantly getting some kind of bug/infection. The second plan is to continuously feed her formula via her mickey button 24hrs a day - slowly so she can tolerate it, this morning she was just getting 10mls an hour. We are trying to get 1000mls of this high calorie formula into her a day - fluid restrictions have gone out the door while we try and get her strong again - if needed they will use stronger dialysis bags if we look like we are getting fluid overloaded.

    It seems her dialysis isn't working great, they are currently running tests to see if we can get better results with her dialysis - if not we might need to do haemo dialysis for awhile to give her body a break and hopefully recover so we can go back on pd dialysis - pd dialysis we can do at home - haemo for Maddie can only be done in Starship.........

    We have lots to talk through with her team about, infusions, treating her antibodies etc but right now while she is so weak the focus is about getting her strong and well again....... But thats not going to happen overnight.........It's all about nutrition nutrition nutrition !!

    We need to build her wee body back up - so today's plan is plenty of anti nausea meds and lots more itchy skin meds to make her as comfortable as possible and allow us to get as much high calorie formula into her, after a rough night of vomiting and nearly scratching her skin to shreds it's great to see the new meds kick in and for her to be more comfortable.

    She's very anaemic but we can't give her an iron infusion for a few more days yet - we need to know the antibiotics have kicked in first. This morning she had a shower which has exhausted her - thus sound asleep - but sleep is good - it's a healing time........

    It's a waiting game..... Lots of samples are in the lab having lots of extra tests that take a bit longer than our routine tests......

    We hope that this week she starts to eat a bit more - currently a good day is when she has eaten 1/4 of a piece of toast!!

    Maddie now has a Gastro team on board at Starship to try to get to the bottom of her tummy troubles. She won't be back in Christchurch anytime soon as there are a number of tests etc that they want to do and to get her fattened up a bit.

      0 comments  |  Login to leave a comment

  • Info for Maddie July 2016     09 November 2016

    Info Maddie’s Condition…July 2016

    The antibodies mean it will be much harder to find her a donor match. With such a small pool of donor kidney's in New Zealand, it may not happen for years.

    Adjusting to the dialysis machine is a challenge and every afternoon Maddie has to stop whatever she is doing and be hooked up to the machine and then every evening again at about 8pm and over the next 10 hours the machine performs the vital function that her kidney can't.

    Maddie tries to get some sleep while bags of fluid flow through a tube into her abdomen, filtering the waste products and "cleaning" her blood.

    The dialysis machine sounds a very loud alarm indicating a blockage on average six times every night.

    Maddie’s parents Sarah and Adam Collins have been solely responsible for Maddie's dialysis as there are no paediatric nurses trained to use the machine in Canterbury.

    Each morning the bags of fluid must be scrutinised for signs of infection – which could be fatal. It is an exhausting responsibility for the most dedicated parent.

    For Maddie, sleep-overs and swimming are out, as are visits to friends and dinners out.

    Psychologically, the disease has taken a toll.

    Maddie was diagnosed with Post Traumatic Stress Disorder this year because of the intensive medical interventions, Sarah Collins said.

    The Auckland Renal Transplant Group prioritised patients on their likelihood of surviving for five years after the transplant, the degree of tissue match with the available donor and how long they had waited, a spokeswoman said.

    "It's just hell being on dialysis. It's no life for a child."

    Doctors told the family last week Maddie had been accepted on to the waiting list for a kidney donation, but she would not be considered for a live donor transplant at this stage.

    Sarah Collins said the news was difficult to hear.

    A pre-transplant treatment required for Maddie means she could not use a deceased donor kidney.

    Maddie Collins' parents want to raise $350,000 to find their daughter a kidney and the United States is the most likely place that a transplant could happen to save her life.

    The Canterbury 12-year-old's family have exhausted their options to get a life-saving transplant in New Zealand.

    Maddie is being kept alive by dialysis but this is not a cure and there are many other side effects and consequences that go with her treatment.

      0 comments  |  Login to leave a comment

  • $131,820.58 donated
  • 2,363 generous donors

$131,821 donated

$350,000

  Donate now   Add to plan

This cause page was created on 13 Jul 2016 and closes at 09:00 NZST (UTC +12:00) on 31 Aug 2017.

Donor Confidence Key  

  • Givealittle moderated
  • Donor validated
  • New Zealand registered charity
  • Eligible for tax credit

Concerned? Report this page

Member Details

Sarah Collins

Individual
Canterbury

Email your friends & family

Customise (* required)

Separate using commas e.g. johnsmith@email.com, janesmith@email.com


×

The link has been copied

×

Report this page

Your details (* required)

×

Donor Confidence Key

Givealittle moderation

Givealittle values the importance of an informed decision when making a donation. We check to make sure that adequate information is provided to donors and that pages comply with our terms and conditions. Pages are not browseable nor searchable until moderated and donor validated. For more information, check out this support article.

Donor validation

A page becomes donor validated when it receives donations from at least three different sources. Pages are not browseable nor searchable until moderated and donor validated. For more information, check out this support article.

New Zealand registered charity

Is registered with the Department of Internal Affairs (DIA), Charity Services (formerly Charities Commission) as a charity.

Tax credit eligibility

Has been granted 'donee status' by Inland Revenue (IRD). Donors to a page with tax credit eligibility may be able to apply for a tax credit.

×