Notes Are Sometimes Reminders You Don’t Want

Sitting at the table scrolling through my phone to find a password I needed I saw the numerous notes labelled William. As time passes it heals and you begin to move past the difficult times although you will never forget when your child has open heart surgery.

William is doing so well now and has really grown into his own little person who is full of energy and life. He is still slimmer for his age but he can eat more than I can at some meals. Sometimes having two eggs, toast and fruit for breakfast. He has always articulated himself in a way that blows me away and reading these notes tonight is a reminder of that and also of the journey we are on.

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February 11th – 2016 Surgery Day

I still remember going with William into the surgery room while he sang O Canada and than when they put the needle in he screamed until the anesthetic kicked in. I than had to leave him and wait. I found this note from my phone:

When William came out of surgery into PICU he was awake which I was not expecting. The nurses asked for us to come in as he was upset. When we went in and they were just trying to get him settled, take his vitals, do ECG and chest x-ray. It was really hard to walk in and see him so upset and then so much happening. I actually had to leave the room because I’m not good with blood and seeing the drainage tubes as well as everything else made me dizzy. I completely broke down in the hallway. I had a nurse check in on me. William had a really rough night the first night because he couldn’t drink anything until 8pm and definitely no food. This is because he was on a lung bypass machine and drinking water and having it go down too fast at the start could cause pneumonia. He just kept saying you guys aren’t listening I want water up to the top of the lid I’m thirsty. He was also saying he was hungry and when we said no food til tomorrow he kept saying you guys are trying to starve me I’m going to starve. This went on until after midnight. I left at around 1:30 I just couldn’t handle it anymore. As a mother you never want to see your child upset for that long but also to not be able to give them what they ask for after a major surgery. I walked back to the Hotel in the sleet snow and actually went the wrong way a few times. My heart broke to leave him like that but I just couldn’t do it anymore. I hit a wall and was breaking down physically, mentally and emotionally. I woke up at 4:30am and went back to the hospital to see William sleeping peacefully.  

February 26th -2016

William had his open heart surgery only a few weeks prior and he woke up crying from his nap. He was screaming my arm really hurts. I asked him where it hurt. He said, “It’s the needles, take the needles out.” I went to hold him and he cried. He said, ” Mom you can’t hold me like that they took a lot of blood out of my arm when they fixed my heart. I’m still healing.”

The days after recovery you are emotional and it’s hard to see your child struggle with the simple things they could so easily do before but than when you have kids they find a way to make you smile. On that same day I made the below note.

William was holding a mirror and he grabbed a wipe to clean it. I told him to not use a wipe to clean glass and that I could get him some cleaner. He said, “I already spit on it mom.” I said, “I don’t know where you get that from.” William than said, “I get it from my mouth.” I burst out laughing! His sense of humor makes me smile on a daily basis.

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William’s medical journey currently requires only yearly check-ups but not all heart heroes need only one surgery. I have had the pleasure to meet so many amazing heart families, nurses, doctors and people over the last year and am dedicated to helping raise the funds needed to support these families and other families throughout Saskatchewan with the Mending Little Hearts Fund of Saskatchewan.

 

 

 

Jump Rope for Heart- William’s Story

William is the first child that lives in Saskatchewan to be ambassador for Jump Rope for Heart! This year close to a million kids across Canada will participate in Jump Rope for Heart in support of the Heart and Stroke Foundation. William’s story will be on every pledge envelope as well as shared at all the school presentations with this video:

Heart and Stroke Foundation funded research has helped with tools to improve the early detection of congenital heart disease like William’s. William didn’t have any symptoms like shortness of breath or blue lips. William’s lungs were having to produce a third more oxygenated blood and the chamber in his heart was enlarging from the toonie size hole. If this was not detected early William would eventually collapse from his heart and lungs working too hard. If this would have happened William may not have survived. I am so grateful that William can be ambassador for Jump Rope for Heart this year! Donations help fund breakthroughs that save lives like William’s. Check out the Heart and Stroke Foundation’s website for great resources on heart health and to make a donation.

 

Sharing William’s Surgery Story Continues To Have A Positive Impact!

Today I received an email from the Stollery Children’s Hospital Pre-Admission Clinic in Edmonton which really touched my heart and made my day, below is part of the email:

“First of all, thank you for taking the time to create a book on the cardiac journey that William and your family embarked on in February, 2016.  I just wanted you to know that the book has been most useful to the parents of the children that also required open heart surgery.  The book has also been very useful for the nurses to use as a teaching tool.  So thank you for creating the book. 
 
We would like to order more of these books with your permission, but need some of the details of how to go about ordering and the cost.  I am hoping that we would be able to get funding to create more books and to be able to give the books to the families that would like to keep one.”
Lillian (Clinical Nurse Practitioner Stollery Children’s Hospital) 
This email is a reminder of the impact that sharing our experiences, even difficult ones can have on other people going through something similar. I will never forget the day I met Charlotte and Jason for coffee to talk about what they had gone through with their son’s heart surgeries  and  travelling to Edmonton for the surgeries. We talked about everything from open heart surgery, The Stollery Children’s Hospital, costs, accommodations to recovery afterwards. When they asked me if I wanted to see a picture of their son after his surgery I wasn’t sure I wanted to.  I knew I needed to so I could better prepare myself for what William would go through. I don’t know if they know how much that coffee meant to me! I felt much more prepared because they took the time to meet with me and share. They were there for me in a way that no one else could be unless they are a Heart Family! Thank you from the bottom of my heart! You inspired me to share William’s story with others to be able to help support them in the same way you did for me. I feel honored to be able to continue to support the Stollery Children’s Hospital with these books of William’s surgery and recovery!
“Everything you do has some effect, some impact” Dalai Lama

Mending Little Hearts Fund Logo Approved Today!

A very exciting day for Saskatchewan Pediatric Cardiology! The logo for the Mending Little Hearts Fund of Saskatchewan designed by Giles Woodward and his team from Two Six Creative and Studio Woodward was approved today! Thank you from the bottom of our hearts for donating your time and the logo design to Pediatric Cardiology!

Photo Below: Pediatric Cardiologists- Dr. Tim Bradley, Dr. Scott Pharis, Dr. Ashok Kakadekar, Dr. Charissa Pockett, Giles Woodward, Corey Tomczak, Lynne Teffler and Juanita Praksas

The Mending Little Hearts Fund of Saskatchewan was recently created because of the need to support the families who have children with congenital heart disease. This fund is overseen by the pediatric cardiology department based at the Royal University Hospital and they provide care to children all across Saskatchewan. This department currently has over two thousand patient visits a year and is operating under-resourced in comparison to all other pediatric cardiology programs across Western Canada.  This fund helps support families right here in Saskatchewan.

As a parent of a four-year-old boy that had open heart surgery February 10th 2016, I am proud to be a part of this project and to work with Giles on it. Many of us see the need and demand for the Mending Little Hearts Fund of Saskatchewan. William’s surgery was in Edmonton but all appointments prior to and following the surgery are in Saskatoon. You can read more on my blog about our journey.

When you make a donation to the Mending Little Hearts Fund of Saskatchewan, you would be providing funds to support the following identified needs:

-IPADS and toys for each room to help keep the children happy and distracted while all their tests are being done, this can take up to a couple hours. This is so important because when William had the first ultrasound of his heart, he was scared and got really upset.  He then would not stay still and needed to be sedated. If there were toys and other items that could be used to distract him that would have been helpful and maybe he would have not needed to be sedated. We then had to watch him through the night and wake him every hour so that he didn’t sleep to deeply. He got really sick and was out of sorts for 24 hours after being sedated.

– Help fund the CHAMPS camp held in Saskatoon for children ages 7-15 years old from all over Saskatchewan with congenital heart defects.  It is so important that children are able to socialize with other kids who have been through the same or similar experiences as them. The camp provides education about nutrition and physical activity for children with heart conditions.

-Blankets and Blanket Warmers- Children, especially infants can get cold during tests and this would help to keep them warm and more comfortable.

-Family Travel Expenses- It cost our family over $5000.00 to go to Edmonton for William’s open heart surgery and that amount doesn’t take into account loss of pay for taking time off for his recovery, holding his daycare spot, counselling appointment costs for PTSD, etc. For many families, the cost of having a child with a heart problem is significant and can affect the whole family for many years.

-Phone Cards-  These are so parents and caregivers can connect with family and friends for support when they have to travel elsewhere for their child’s surgery or are at appointments and do not have a cellphone

-Travel costs to get to appointments- Some families can not afford to pay for cabs or public transit to get to appointments

These are just a few examples of how your donations will have a tremendous impact on children and families going through significant struggles coping with their child’s heart condition.

You can donate now through link below:

https://childrenshospitalsask.ca/how-to-help/donate/donate-now/

Stay tuned for more information on the Mending Little Hearts Fund as well as fundraisers that are happening!

Give A Gift From The Heart This Holiday Season

Certain dates mean something to each of us. December 1st will always remind me of the first time I had to leave William to be put to sleep for his first MRI. He was screaming mom and I just had to walk away down the long hallway and through the swinging doors. Once you go through the swinging doors you can’t go back unless you are buzzed back in. It was so hard to take every step away from him. I wanted to just hold him until he was asleep. William’s MRI was what fast tracked his open heart surgery in February 2016 and everything that followed.

When I look at him this morning I am so grateful for how well he is doing and that they were able to repair his heart with no adverse side effects. He will be able to enjoy this holiday season unlike some other children that will be in the hospital receiving care for their heart condition! The Pediatric Cardiology Department in Saskatoon has amazing staff and I am so grateful to be able to continue to help support them however I can. There is a Saskatchewan Children’s Heart Fund (Mending Little Hearts) set up through the Children’s Hospital Foundation of Saskatchewan so this holiday season when you are thinking of giving back please consider donating to this fund. Donations can be made through the Children’s Hospital Foundation of Saskatchewan and support children right here in Saskatchewan:

Saskatchewan Children’s Heart Fund  #1 – 345 Third Avenue S  Saskatoon, SK  S7K 1M6

Here is a great article on some of the great things that the Pediatric Cardiology Department are doing:   https://childrenshospitalsask.ca/saskatchewan-pediatric-cardiologists-spearhead-innovative-treatment-in-western-canada/

Thank you for your support and happy holiday season!

Peanut Butter & Mice

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William’s appetite has sure increased since his open heart surgery. We are grateful for this as I have talked to a few families that have had feeding issues after child’s surgery. This morning after already eating a whole turkey sandwich, William asked for a peanut butter and jam bun.

While I was making it William went to grab the big jar of peanut butter out of the cupboard and I told him that we don’t use that one for us just for the mice!

William said,”How on earth do mice eat that their mouths are so small?”

I replied, “They lick it and don’t have a bun with their peanut butter.”

William then said,”That’s Impressive!”

He has now gained 7 pounds since his surgery and is wearing size 4 clothes! William loves play school, hockey and anything to do with farming. We love watching him eat so well and to see him so healthy!

 

That’s A Wrap!

We just finished the filming and photos for the Heart and Stroke Foundation videos! Doing these video interviews was a lot harder than I thought. I haven’t really talked about every appointment from when we first knew about William’s heart condition, right through to surgery and recovery in a long time. There definitely was a lot of raw emotion that came out. I had apologized a few times but then realized that I will always have the memory and feelin around all the milestones on this journey. The film crew was amazing and you could see they were very touched by everything, in fact they even teared up a few times. William of course was a little star and played with all his toys while explaining every piece on all the equipment. He told the film crew where the scoop was on his excavator and what it does. It was so sweet! Carly did a private interview which I can’t wait to hear! It will be exciting to see how it all comes together. Stay tuned!

 

A First For The Province and Canada

Today I had the pleasure of talking with a group of people from the Heart and Stroke Foundation that will oversee a project that we are very excited to be a part of! William will be the first ever child ambassador for Jump Rope for Heart from Saskatchewan. His story will be shared across Canada in up to 4000 schools this school year. Close to a million children participate yearly in the program learning about heart health, jumping rope and raising money for a great cause. Having worked for the Heart and Stroke Foundation in the past with this program it means a lot to be able to still contribute.

Tomorrow we will have a camera crew coming to film the video for Jump Rope for Heart as well as a general video that can be used by the Heart and Stroke Foundation. When I talked to William about it he was so excited that people he didn’t know were coming to our house from Saskatoon and bringing him a skipping rope. Carly was equally excited but for different reasons. She wants to be on camera and feel like a movie star. It will definitely be an exciting day for us as a family as we will celebrate my birthday, 193 days since William’s surgery and the filming of these videos!

“This Is How Research is Creating Survivors”                                                                                           Click link here to see all the milestones that have come from Heart and Stroke funded research: http://www.heartandstroke.com/atf/cf/%7B99452d8b-e7f1-4bd6-a57d-b136ce6c95bf%7D/HSF_RESEARCH_MILESTONES_EN.PDF

Donate to The Heart and Stroke Foundation:             http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3479069/k.1A2C/Donate_to_the_Heart_and_Stroke_Foundation.htm

Emails From Wiliam’s Nurses

There isn’t a day that goes by that I don’t think about how fortunate we are that William’s surgery went so well. That we had all the support we had and continue to have. I also think about what we can do to support others. There are families that are going through this now, will be going through this or have to go through this again. We will continue to help support Pediatric cardiology in Saskatoon but to receive these two emails really touched my heart! These two amazing nurses provided us so much support and more importantly take care of William by going above and beyond to make his appointments as easy on him as possible. I have so much appreciation for all they do for heart families!

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The Tenth

The tenth of every month will always remind me of William’s open heart surgery and always be a day that allows me to reflect and be grateful. To hug our little boy a little tighter and to remember how fortunate we are.

Today is a special tenth as it has been 6 months since William’s open heart surgery! In some ways it feels like longer but on the tenth I still re-live a part of that day.

At this time of day on February 10th William was out of surgery and in the pediatrics intensive care unit (PICU). He was screaming and crying for water and food. “I’m so thirsty and hungry, you are trying to starve me,” he would scream. I felt sick, helpless and heartache I have never felt before. I felt like I wasn’t meeting our child’s basic needs. This went on for another hour and then we were able to give him some water on a swab until the doctor saw him at 8pm. This only made things worse and made William more upset because it wasn’t enough water. He had not had anything to drink since 9pm the night before. Every minute seemed to last an hour. I remember looking at the clock and it finally being 8pm and asking William’s nurse where the doctor was. The doctor was at the nurse’s station. When I asked William’s nurse to go get him so we know if we could give him some water he said he couldn’t leave William’s side.

I walked over to the nurse’s station and said to the doctor, “Can’t you hear our son screaming?” There was no response. I then said,”Can you please come and check on him and let us know if he can have water now?” He said,”I’ll be there when I can.” It was 8:45pm when we saw the doctor and were able to give William some water in his water bottle. William was so over it by then that he became inconsolable. He was then given medication to calm him down which caused him to hallucinate. The remainder of the evening was a blurr of William saying things that didn’t make sense to him screaming in pain to him crying for water and food. To this day William always wants his water bottle filled to the Top Of The Lid!

Today I want to thanks to everyone that has been there for us and supported us! We are forever grateful and I don’t know if you will ever know the impact you have had in our lives and on our hearts! William is doing great and is growing like a weed! His cracked heart is fixed! Today we celebrate another milestone in his recovery!image.jpg