A Word of Thanks from Jules to Precious Hearts

Our family had a lovely visitor on Saturday – someone I had only ‘met’ on Facebook until now.  Suzanne and her band of boys took the drive up to our gorgeous mountain (sunny for the first time in a long time!) with an unexpected surprise for Julian.  Nigel and I knew that something was coming for him, but we weren’t sure what, so our surprise was as great as his was!  Now, our lad is always unsure how to react when he receives a gift, so the huge smiles and excitement didn’t really show itself until Suzanne and the boys had left, but it was there, simmering under the surface until he was sure no one was looking!  Too cool to be really excited at 12 you know.  This is how it all went down, in his own words:  

"‘That bag looks familiar,’ I said. Well, it was true. The signature bag of Precious Hearts (Charity for kids undergoing Heart Surgery) looked very familiar indeed. After all, who wouldn’t forget the day they got a bag full of toys and puzzles to play with while you’re waiting for heart surgery? Anyway, in the bag was a large box... a large, heavy box. And then Susie said: ‘That’s for you,’ I didn’t know what to say. The something in the box was for ME. I hurriedly ripped off the paper and opened the box. And there, sitting in that very box, was a laptop. And not just any laptop. An Acer 750 GB Windows 8 laptop! I was speechless. The last time I had my very own laptop was at least 7 years ago now. I was so excited I nearly wet myself. So, I got stuck into setting it up. 

Well my fellow readers of Saving Jules Blog, that’s how it all happened. But enough about me. Let’s start on Precious Hearts. Precious Hearts: “Gives these children a reason to smile, and supports the families who are always right beside their little fighters.” The children the quote speaks of are the many children that have to stay in hospital waiting for heart surgery. 

The signature bag of Precious Hearts can hold a range of different things, like Toys and Crayons, to Puzzle Books and yoyos. The one that I received when I was waiting for heart surgery was the greatest thing I had ever experienced at the time. I can only imagine what it would be like for all the other kids.

Precious Hearts will buy these little rays of enjoyment and puts these into the bags. These bags are then given to the children lying in wait. 

I would like to thank Precious Hearts on behalf of all children with Congenital Heart Diseases. Thank you so much for going out of your way to bring that special spark to all those children with no battery.

Thank you so much for reading my little input to this blog.

Julian Summers."

As A Mother, Do You Know?

This post is a follow on from “You don’t look sick”  What the hell would you know?  I wrote this in response to a woman using the disabled car park at the kids’ school because her son had a broken leg.  When Nigel told me of her comment to him of, "If you don't want to share, get here earlier" it got this running through my head.  Please, share this with your friends . . .    


As A Mother, Do You Know?  By Coleen Summers

As a Mother, do you know what it's like to fall in love with someone in an instant?  In that moment you first see their tiny face, hear that beautiful cry, feel that wonderful warmth and smell that unique 'I'm your baby' smell?   

As a Mother, do you know what it's like to wonder how you could have so much love for such a small human being?

As a Mother, do you know how it feels when your baby smiles at you for the first time?  Laughs their first laugh?  Takes their first step?  Starts their first day of school?  Writes their name for the first time?  Draws their first picture?  Reads their first book?

As a Mother, do you know what it's like to to swell with pride when a stranger tells you how polite your child is?

As a Mother, do you know how it feels to be completely in awe of their amazing hugs?

As a Mother, do know what it's like to wonder why you sometimes feel like crying when they say to you, "I love you, Mummy"?

You do?  So do I.

As a Mother, do you know what it's like to hear your child scream "Mummy!" and feel your blood run cold?

As a Mother, do you know what it's like to race to catch your child as they collapse to the floor?

As a Mother, do you know what it's like to live in uncertainty because no one can tell you what's wrong with your child?

As a Mother, do you know how it feels to have the term 'Mortality Rate' used in reference to your child?

As a Mother, do you know what it's like to wait in a hospital waiting room while your child undergoes heart surgery, and watch the other parents be called to the Recovery room, while you sit there, still, 45 minutes past the time the doctor's said they would be finished by?

As a Mother, do you know?

I do.

I know what it's like to put my hand on my son's chest every night before I go to bed, just to reassure myself it's still beating.

I know what it's like to feel like crying, simply because I've heard the words "Just 5 more minutes, please, Mum" when I've woken him up in the morning.

I know what it's like to hesitate before going into my son's room when he's slept in, because . . . "What if?"

I know what it's like to see friends lose their babies, their children, and to feel guilty because "There but for the Grace of God, go I."

I know the feeling of despair when my son tells me, "I don't want to wake up in the morning.  I want to be with God in Heaven.  Then I won't be a heart kid anymore."

I know what it's like to live every single day in uncertainty.

I know what a broken heart feels like.

As a Mother, I know.

The Importance of Organ Donation

There is a page on Facebook that I follow and make sure that I go to on a daily basis called ‘Precious Hearts’ (https://www.facebook.com/preciousheartspage?fref=ts).  On Monday 7th January, I noticed a post which read “Did you know that there are approximately 1,600 Australians whose lives are depending on a transplant right now? Just one donor can save the lives of up to 10 people!”     

 

Wow!  This is a stunning amount, and I was curious enough to see if I could find some more information about organ donation in Australia.  There are so many statistics and so much information available on the Government website http://www.donatelife.gov.au, so I have taken what I feel are the most relevant and interesting to me as a parent of a child who will one day be put on a transplant list to undergo a heart/double lung transplant.

Did you know?

*  One organ and tissue donor can transform the lives of 10 or more people

*  Around 1600 people are on Australian organ transplant waiting lists

*  The Australian Government funds dedicated doctors and nurses in 73 hospitals to work specifically on organ and tissue donation

*  In 2011, 337 organ donors gave 1009 Australians a new chance in life

*  Australia is the world leader for successful transplant outcomes

*  The majority of Australians are generally willing to become organ donors (80% of the population) and tissue donors (78% of the population); however, less than 2% of people who die in hospital will be eligible to donate their organs.  Many more people can become eye and tissue donors as tissues can be donated up to 24 hours after death, regardless of where death occurred.

*  Australia’s family consent rate is low, with less than 60% of families giving consent for organ and tissue donation to proceed; 44% of Australians do not know or are not sure of the donation wishes of their loved ones; 92% of Australians that are aware of their family members’ wishes indicate that they would uphold their wishes

*  Every family making the decision about whether to agree to a donation proceeding is now able to receive dedicated support from DonateLife Donor Family Support Coordinators, whether or not donation proceeds

Thank you to Traci from Precious Hearts for the use of this image, exact source unknown

Each one of us has the chance to save lives.  Of the approximately 1600 people on organ transplant waiting lists, sadly many will die waiting for the gift of a heart, liver, kidney, lung or pancreas transplant.

We need to discover for ourselves, the facts about organ donation and to make and register our own decisions about donation and to make sure that we all know our family’s wishes as well.  In Australia, our families will always be asked to confirm our donation wishes before any donation can proceed.  You can register as an Australian organ donor by calling 1800 777 203, visiting a Medicare Service Centre, or your local GP may also have registration forms.  You must be 16 years or older to register your organ donation decision.  Many Australian’s may have previously registered their decision elsewhere, perhaps on your driver’s licence, however it is still extremely important that you register on the Australian Organ Donor Register.  It is the only national register and details can be linked to your Medicare number.

Almost everyone can help others through organ and tissue donation, and while your age and medical history will be considered, you shouldn’t assume you’re too young, too old or not healthy enough to become a donor.  If you are a member of a church, and you’re not sure if your religious belief’s support organ donation, please talk to the leader of your Church to help you in your decision making process.

Did you know that you can also donate a kidney or part of your liver now, while you’re still alive?  This is, however, usually restricted to those wanting to transform the life of someone you know.

Less than 2% of people who die in hospital will be able to donate their organs, so it is very important to identify all potential donors and support their families whilst they make the decisions about donation.  Many more people can become eye and tissue donors as tissues can still be donated up to 24 hours after death.  The way a person dies determines whether or not they are able to donate organs and tissues; a person who has been declared brain dead and are being artificially ventilated in hospital may be able to donate organs also.  Brain death occurs when blood circulation to the brain ceases and the brain stops functioning and dies with no possibility of recovery.  Tests are performed by two independent and appropriately qualified senior doctors to establish that brain death has occurred.

Organ donation is less common after a person’s heart has stopped beating, referred to as cardiac death; the circumstances behind these deaths means there is usually no chance to discuss donation with the person, leaving the decision to the family.  Letting your family know of your wishes regarding organ donation makes it so much easier if they ever have to make this very difficult decision.

There is a lot of support available for families having the make these hard decisions through the Intensive Care Unit team caring for you as well as the DonateLife Agency Donor Coordinator and Donor Family Support Coordinator.  They will give your family as much support as they need, both during and after the decision to donate, regardless of their decision, and if the family wishes, they can be provided information on the outcomes of the donation by the DonateLife Donor Coordinator, and they can also receive information on how to write anonymously to the recipients.  Families making this decision also have access to free bereavement counselling. 

More than 30, 000 Australians have received organ transplants since 1965; over 900 organ transplant operations are performed each year.  Many more tissue transplants/grafts are performed, of which about 1500 are corneal transplants.

Australia is the world leader for successful transplant outcomes, for both survival rates of recipients and in the number of organs that are able to be transplanted from each donor.  Organ transplants dramatically improve the lives of recipients, allowing them to lead active and healthy lives where once this was not a possibility.  Friends and family of recipients also see a huge difference in their own lives, watching their loved ones free of the constraints of their illnesses.

In Australia, when a person is put on a transplant waiting list, it means they have ‘end-stage organ failure’, and all other possible treatments have failed.  Waiting times depend on whether or not there is a suitable donated organ available, and the allocation of organs through the waiting lists (there are waiting lists for each transplantable organ – heart, lungs, kidney, liver and pancreas).  A person is usually on a waiting list from between six months and four years, however if there is no suitable transplant available, it could be even longer.

Organs are allocated to recipients in a process that is not based on race, religion, gender, social status, disability or age (unless age is relevant to the organ matching criteria); it is a fair, equitable and unbiased process.  The waiting lists are managed by different groups depending on the organ involved and the state or territory where the recipient lives.

Allocation is a complex process and there are extremely  strict guidelines about the allocation of organs and tissues in Australia, and these guidelines have been developed by The Transplantation Society of Australia and New Zealand (TSANZ) -  Organ Transplantation from Deceased Donors: Consensus Statement on Eligibility Criteria and Allocation Protocols.  

Criteria for potential organ transplant recipients include:

*  How well the organs match the person

*  How long the person has been waiting for a transplant

*  How urgent the transplant is

*  Whether the organ can be made available to the person in time

*  Recipients must be matched to organs such as heart, lungs, liver and pancreas by blood group, size compatibility and urgency

*  Kidneys are matched by blood group and tissue compatibility through the computerised National Organ Matching Service, which is administered by the Australian Red Cross Blood Service.

Up until I started researching organ donation in Australia, I was under the impression that having it on my driver’s license would be enough.  As soon as I found out that I should be registered on the Australian Organ Donor Register, I made a quick phone call and both Nigel and I were registered as donors while I was still writing this blog.

I urge you all to do the same.  It’s the difference between life and death for many of us.

Precious Hearts

If you have ever had to occupy a child in hospital, then you will understand what a life saver this gift was to us!  Julian had been booked in for his surgical procedure – creating a hole in his heart (in effect, an ASD – Atrial Septal Defect) and putting in a stent to keep it open - on Wednesday 3^rd August, 2011.  He spent the day fasting (and didn’t complain once, I might add – colour me surprised!) and entertaining the little 4 year old boy in the bed next to him who was due to have a Pacemaker -  is ‘put in’ the wrong way to word it?  Unfortunately, there was a complication with the procedure before Julian’s and the specialists opted to postpone Julian’s until the next day.  Nigel and I were fine with that, and Julian just wanted to chow down!

In my previous post of “Too long to diagnose, almost too late”, I briefly mentioned a charity called ‘Precious Hearts’ and that the nurses on the Cardiac Ward gave Julian a gift from this particular charity, which was a bag of puzzles, games, etc, as a reward for doing so well and keeping young Aodhan occupied and happy until his surgery.  

Did you know that 1 in 100 Australian babies are born with Congenital Heart Disease, and chances are, you may know one; my daughter Ella-Shae and youngest son Boey, both have CHD’s (hopefully it will repair itself as Ayan’s did), and Julian has an Acquired Heart Disease, which means that he wasn’t born with it, it developed as he grew.

Precious Hearts is a wonderful charity that gives these children a reason to smile and relax while in hospital, and also supports their families who are always and forever by the sides of their children.  It’s founders know firsthand what children with CHD go through.  A hospitalisation can last as little as a week, and as long as several months.

Children are extremely restricted after open heart surgery, their movements are limited and most of their days are spent in bed or in a chair; they have drains that are required to stay in place after surgery.

Precious Hearts provides Care Packages to children recovering from heart surgery, a gift which lifts their spirits and helps them pass the many idle (and boring!) hours spent during their recovery.  They are age appropriate – Precious Hearts caters for birth to 16 years of age - and filled with items such as colouring and activity books, pencils, textas, crayons, story books, puzzles, toys, the list goes on and on.  The Care Package program is running at The Children’s Hospital Westmead, where there are close to 1000 heart procedures performed each year.  The Care Packages are kept on the cardiac ward and distributed by nursing staff when the children return from the Intensive Care Unit (ICU) after their surgeries.  Care Packages are also sent out every week to children in hospitals all over Australia.

Each bag is packed by a Precious Hearts volunteer, no two packages are ever the same, and a lot of care is taken to ensure that all items are suitable for the age of the child who will receive it.  This is the Care Package that Julian received after his procedure was postponed: 

Precious Hearts is operated entirely by a handful of volunteers who have all been personally affected by CHD and are driven by their wish to extend a helping hand to others families in the same situation.  They work hard to raise funds every year, all year round, and volunteers also work hard to raise awareness of CHD within the community.

So, how can you help?  There are many ways to help Precious Hearts get these sanity saving Care Packages to children (and parents) who desperately need a bit of distraction in their lives.   

*  You could organise a Donation Drive with your local school, and it’s the perfect way to fill up those bags – although they do ask for only new items to be donated.   

*  Start a Coin Collection at work,  donate a voucher for a food outlet, or even fuel.  Precious Hearts even gives iTunes vouchers to teenagers stuck in a hospital bed!   

*  Sponsor a Care Package for $30 and it will be given to a child in your name.  

*  If you would like to help out with a cash donation, all donations over $2 are tax deductible.  You can donate on their Give Now Page:  http://www.givenow.com.au/precioushearts

Precious Hearts is a wonderful charity, and they are helping our young Heart Kids enjoy a bit of fun and time away from their worries, at a time when life could overwhelm them.  Head on over to their Facebook page to read about all the families they have helped out:  https://www.facebook.com/preciousheartspage?ref=ts&fref=ts

Julian’s stay in hospital for his surgical procedure was a very stressful time.  Precious Hearts helped to take away a lot of the worry, and boredom, and made the rest of our stay so much easier.

Thank you, Precious Hearts, from The Summers’ Family.