December 16, 2014

Joshua's Hope

For the last three years I have been feeling led to start a foundation to aid in the fight for better adult care of Congenital Heart Survivors; I say 'led' because I felt that God was asking me to do it... and my answer was always 'No, I can't'. I am not sure if you know what it involves (even I don't know the extent of it...) but it takes a lot of 'seed' money and lawyers and buerocracy that I know nothing about. It was/is overwhelming to me so I continued to shut the idea down. Money alone stops me, forget all that red tape stuff. So I have moved into the 'mother volunteer' role and it's been serving me well, serving the agencies well, and hopefully one day serving Josh well. However, this past year the answers have become increasingly clear. I want to do more than be a bystander to Joshua's future; I am simply not satisfied with waiting for others to get the job done. I want to be at ground zero, on the front line; I want to be a part of making it happen. I have learned a lot about the health care system, I have discovered the amazing things that are happening, and the awesome things that are about to happen. I am learning daily about the specialty of Congenital Heart Defects, and how incredibly hard they are to treat. I am also learning about all the problems, the setbacks, the stumbling blocks that face Josh and his peers in the years to come, if nothing gets accomplished now to change that for them.

My dream, shared by some key people is to have a Heart Institute within the walls of Sick Kids that treats all Congenital Heart Defect patients. Pre-natal, pediatrics, and adults alike. All patients, one model of care, one building. It would be a first, it would be a ground breaking project and it would forever change the face of medicine, particularly in this field.

The first steps are baby steps, reaching out to parents of CHD kids, sharing with them the key problems that face our kids, talking with our government officials, asking tough questions of the government and boards of the hospitals. It isn't going to happen over night, sadly it may not happen in my lifetime without a LOT of support from key people... people like you, people who have read about Josh's story and been touched by it.

A few weeks ago I once again entertained the idea of starting a foundation, with the key mandate being to aid in this endeavour. Once again the same issues arose... but then I had a thought, God inspired if you ask me. I could start up a third party organization under the umbrella of the Sick Kids foundation. The name even came to me on the spot... Joshua's Hope. I contacted my rep at Sick Kids and asked her about it and received a green light... and before you know it, here we are!

Joshua's Hope will raise awareness about the growing issues surrounding adult care for kids like Josh, and the money we raise will go directly to the highest priority needs of the Labatt Family Heart Center at Sick Kids Hospital, my aim is to help fund the little projects that will lead to the larger project of this Heart Institute. This is a huge undertaking, it will require skills that I didn't know I had but will have to come up with, it will require the help of some good volunteers, and yet, I know that it can happen.

I haven't put together all the little bits and bobs just yet, with Christmas on the horizon I have decided to wait until the new year to think about websites and things of that nature but I urge you to visit our donation page on the Sick Kids foundation website (Joshua's Hope). I also ask you to share this with your social media contacts so that we can start getting the word out. Your help in this is both greatly appreciated and SO necessary! I really can't do this without you.

Hope for their lifetime starts today,

November 28, 2014

How can you help?

Yesterday I posted about a project that I am going at full force in the coming years. The dream of a Heart Institute that melds pre-natal care, pediatric care and adult care under one roof, one care team, one model of care. As I mentioned, this is not a far-fetched dream, the window is open but it will only be open for a shot period of time. If ever there was a time to change the adult care system this is it. I asked each of you, my readers, to help me and I promised to share in the coming days how we need your help. Starting on a journey likes this takes a lot of noise, we need people to stand up and take notice. We need to make them see the problems that need addressing. You can start by sharing yesterday's post with all of your contacts on social media. This is a huge step towards change, social media these days can breathe life into a cause when enough people care to share. (Look at what happened with the Ice bucket challenge!).

Today I am going to ask you to think about doing more than reading about Congenital Heart defects. I am going to ask you to write to your local politicians, you MP your MPP, your city council rep. I am going to ask you to write to every contact you have, everyone with any kind of influence or power, anyone within the media you can think of who may be able to help by lending their voice to this issue. I am asking you to stand beside me and join voices with me. Contact me if you need to get an email address or need help composing the letter... or simply copy and paste the article from yesterdays' post. I am happy to help you.

We need media contacts to get a hold of this story, to share with the masses about Congenital Heart Defects, the gaps in the adult system, and the struggle that patients face.

To make this happen it will take patience, and time, and some powerful and influential people to start talking about it and making it a priority, but, and this is big... it will take you. Friends and family who know and love someone who suffers from a congenital heart defect. Your voice matters. For every child (for the most part) who is born with a CHD there are two parents, four grandparents, and countless friends and extended family; all those people are tax payers with a voice.

This is a large undertaking: I know that I am asking a lot. However, I also know that you all have shown me before (#redforjosh) comes to mind that when you want to, you can make a difference.

Thank you for all your support and action! Feel free to leave comments when you have taken actions to help this endeavour! ---- AND SHARE yesterday's post on your social media... share today's post. MAKE SOME NOISE!!! :)

November 27, 2014

I need your help.

Let me set a scene...

You have an illness, you were born with it. You have suffered agonizing surgeries, agonized with the reality that your illness makes you different from everyone else, had multiple scares, suffer anxiety, depression, fear, worry, and you know that there is no cure. You have been cared for by excellent doctors who put your care first, they know you inside and out (literally). They do special little things to help make things a little bit easier as the years pass by. Making the small things matter, making a smile the most precious gift you can receive some days.
Then, you grow up. You find yourself an ‘adult’ and you are thrust outofthe world of pediatric medicine at a mere 18 years old. Too young to fully understand all that that entails. You know you need to go to a doctor for regular checkups, but you are scared, unsure, maybe even unaware of the implications of not going because you are still young enough to believe that you are invincible.
Maybe you do go to regular checkups, but your doctor isn’t a specialist in your illness, they don’t understand all the facets of how your illness affects you, you fall through the cracks and you find yourself suddenly at risk of a very early death as a result. Perhaps they give you medicine for your illness, but you don’t have insurance to pay for it because this is a per-existing condition. Where once you had a medical team who took care of you, who educated you every step of the way, you now find yourself alone, trying to educate your new medical team and where fear once lived it now thrives.

This is the state of the adult care for congenital heart defect survivors.

I have been working with Joshua’s surgeon and the sick kids foundation to make a mutual dream a reality. I wrote the following essay/article to help on this new ground breaking project that could change lives and the medical system forever.
In the following weeks I will share more about how you can help, what you can do, how you can become a part of this new and exciting adventure. Please, if you share this, with as many people as possible then together we can make history and save lives.

There’s a killer stalking my child.  And almost 200,000 other mothers know the same fear. This killer gives no thought to race, gender, sexual preference, religion or politics; it comes swiftly and sometimes silently and once it grabs hold of you it will never let you go.
The killer is Congenial Heart Defects (CHD) and it kills more children annually than all childhood cancers combined.  It is estimated that one out of one hundred children born in Canada will be born with some form of CHD.
In the 1950’s and 60’s a child born with a congenital heart defect had a twenty percent chance of surviving to adulthood. Fortunately, today, ninety to ninety-five percent of children born with a CHD survive. The growing number of survivors is leaving us with a beautiful yet unique problem.  Where we have never before needed an adult care system, we now have a desperate  and constantly growing need for specialized cardiologists in the field of Congenital Heart Defects.
“It is important for cardiologists to specialize because heart defects are many, varied, and complex and they are not the same as cardiovascular disease. A heart defect is not the same as a plaque build up in the artery and all that that entails, however complex. Until recently, there weren’t enough survivors to justify a specialty, nor was there enough interest,” says Shelagh Ross , President of Canadian Congenital Heart Alliance
My son Joshua is one of these survivors.  He was born in 2008 with a complex congenital heart defect; we were told not to expect him to live. Today he is six years old, has had four open heart surgeries, four cardiac catheterizations and suffered a massive stroke, yet he is here, and alive because of  a medical research and a pediatric system that has changed how it thinks about patients and patient care. This is a staggering success for the field of pediatric cardiology, yet there are systemic problems that result from the dramatic increases in the survival rates of our CHD kids.
When Joshua turns 18 he will leave the safety of his pediatric hospital and enter an unknown adult world of medicine that is not ready for him. He will leave Sick Kids in Toronto and be met with new doctors who may not be specialists in the world of congenital heart defects. As a parent I have learned a great deal about the medical system from pre-natal, through the pediatrics and now realize what the adult care system is currently facing in terms of larger numbers of survivors, a lack of specialized doctors and health care providers.
But what would happen if there were a place where adult CHD patients could all be treated with equal care, equal value--just one all encompassing system such as they already receive as kids? What would happen if we had a place for all CHD patients—baby, child or adult? What would happen if we went to one place for prenatal care, pediatric care and then adult care? What if Josh, who has always been followed by one specialized cardiologist, whose surgeries were always done by the same surgeon, was followed throughout his life by the same institute, the same care providers?
This is a dream that could become reality!
I see all the problems that face Josh and survivors like him, I see the lack of specialists in this field, I see the lack of education for the patients leaving pediatrics, I see the cracks in the system that are just waiting for kids like Joshua to fall through and I see a deep need for change. As a parent it is my job to take care of my son, to help him in any way that I can. I cannot cure my son, I can’t fix his broken heart, but I can do everything in my power to see that his future is as secure as possible. I can make sure I tell everyone who will listen about this silent killer who stalks our kids. I can do whatever is necessary to see a place like this dream institute become a reality.
This is not so far fetched a dream. It only needs an action plan. It needs people like you, people with a voice, people who care about the future of our children, people with the power and will to make things happen, to ensure change.
Congenital Heart Defects are not like Cancer.
There is no cure for CHD. You can’t outgrow it. It doesn’t just go away with time. A child born with a complex heart defect will need lifelong care and probably numerous surgeries. An Institute that specializes in their health care would ensure higher success rates, and ultimately less money for the government. If all care is under one roof, then you have two less roofs to maintain.  There are only 15 specialized heart centres in Canada, and with 180,000 CHD survivors, now and growing annually, this is the time to move from talking about change, to taking action towards change.

October 29, 2014

A diagnosis.

Today is world stroke day... I have been amazed at the damage that a stroke can cause, I learn more on a daily basis, not through books but by studying my son. It's been six and a half years since Josh had his stroke (at 3 months); it feels like 20.

Last week we had an EEG (sleep deprived - which in my old age takes a while to recover from... even though the sleep deprivation was for him). The results were "there's a LOT of activity going on in there".  Apparently he's having a lot of seizures in the site where the stroke happened, they figure there is a few different types of seizures and are occurring frequently. (There is much for me to learn in regards to this new information so pardon my lack of knowledge right now).

Why is Josh not sleeping? Seizures... not fear, not worry... seizures. Why is he not catching up developmentally? Seizures... The diagnosis is 'Epilepsy' which is a term given for someone who has had two or more seizures without known cause (ie. a fever or fall or illness). This was new to me, I had always thought that epilepsy was a disease that you were born with. Anyway, the reality for us as a family hasn't really changed that much; he's been having these seizures for who knows how long, but the label is a little scary.

HOWEVER... and this is big. We got answers! I have been thinking that I am crazy, worrying that I am for some reason seeing things in him that are totally not there, but the truth is now that we have a diagnosis I can rest a little easier knowing that we are on course to get him the help he needs. That help started in the form of new meds, and guess what? He started the meds 6 days ago... and we are on day 5 of sleeping ALL NIGHT LONG!! You have no idea how this little bit of change has and will impact our family. I feel like a cloud has lifted and though it's not fully light yet, the sun is shining through.

The meds should help in many ways, ways that excite me and have me hoping once again for dramatic changes and miracles in his life. One of the biggest changes is that we now have a neurologist following him, one who specializes in both strokes and seizures. This is great news given we have not yet had one specific doctor following up with him before.

Thank you all for your prayers last week, and for your patience in waiting for an update.

Please, take the time to learn about the symptoms of stroke, the help options for those of you who know someone affected by a stroke; you can use the link to the pediatric stroke page on this blog or just Google it. It takes a few minutes but it can save a life.

October 17, 2014

Super Josh visits Cardiac Clinic

Josh hands over his health card and gets himself registered... hes growing up.

on Wednesday we had our cardiology appointment, this update is past due and I apologize for that for those of you who have been asking.

The main reason (for those of you not caught up) for this last visit was that Josh has had several episodes where he suddenly goes very pale to the point of blue, gets very sleepy, and VERY cold. One episode had his core body temp on the borderline for hypothermia. We have also been noticing other 'odd' things that require further investigation. Then on Saturday during his brother's birthday party he had another severe episode, this time his colour was non-existent, not even blue, just no colour. He was cold and this time he was losing consciousness. After being rushed to hospital we were told that they believe it could be his heart again. I contacted his Cardiologist and hence the appointment on Wednesday...

OK. All caught up (see previous posts for more detailed description of events).

So, back to the appointment. We did all the required tests and then sat down to talk to our doctor. She really doesn't believe that it's his heart, (good news), she believes that this is neurological (seizures). She did however order a holter monitor for 24 hours to see if it's a heart rhythm issue, and we have a different monitor that we use during one of these 'events' but in her words 'this is to rule out the heart as the underlying issue.

While we were there we also got a call from the Neurologist who has bumped up his sleep deprived EEG to this coming Wednesday... and now we are praying for answers from that, because quite frankly, we need to know what is happening to him.

To make the day more fun for Josh he asked if he could wear his 'heart hero' cape when he went to the hospital so I agreed, and then he had me taking pictures of the different things he does during his clinic appointments. I only had my phone handy and he was moving a lot so the pictures aren't brilliant but they are fun... Enjoy them and please, remember him in your prayers this week.

The 'sticker test' (ECG)

Needs to know if he's getting heavier

...and definitely needs to know if he's grown at all

checking his SATS

now he's having his 'muscles measured' (BP)
nailed that part!

walking to the doctors office

waiting for the doctor

There she is...

He loves her...

nailed that part!

getting his holter

wearing the holter

post clinic tradition of a doughnut for him and a coffee for Mum :)
This is our favourite part of clinic days!

October 14, 2014

My brain may just implode

 For a long time I went about doing things in a disordered and chaotic way, I am not an organized soul... in fact once upon a time I took great pride in my disordered existence. Planning?? What's that?? I remember when Tim and I started dating and he took me out for dinner and he pulled out his planner and started planning weeks in advance what nights we would have dates so that he could schedule his meetings around it... I teased him for years about that night (still do actually). I made it my goal to teach him spontaneity; which lead to a few calls where he was calling to tell me that he was planning a spontaneous date night (four nights away). ;) For the first few holidays we took together as a married couple we actually had to plan time to 'be spontaneous' or our days were planned so perfectly that I wouldn't have time to just wander...

Yes, I tease Tim regularly about it. The truth is though, over the course of the last number of years I have come to envy his organized ways, I have come to appreciate that when we go away we know where we are going, and that we have a hotel when we get there. (My old plan was to arrive in a city and find the closest hostel to crash - which admittedly led to a few nights on a bench in a train station or two).

This month I particularly jealous of him, and I am quickly learning that I need to swallow my pride and admit I have a problem. Today for example... I am a photographer... yet I forgot that it was picture day for Kaleb and sent him to school looking.. well, less than stellar for a picture that will haunt him for years. I had to run home and grab a nice shirt so that his picture wouldn't scream 'my mama forgot it was picture day'. Last week I was annoyed with Josh's teacher for not telling me in advance that he need to bring a potato to school... (he came home and told me he needed a tomato so I went about getting one - not an easy feat that night)... but when he came home from school the next day he brought the tomato and a note from the teacher saying 'potato, not tomato'... turns out it was on the class calendar that is hanging in plain sight on my fridge!

I have two kids library books returning on different days (often I get the days, or sometimes the books mixed up ), I have photo shoot dates ringing about my brain, and meetings with doctors and organizations regarding CHD awareness... and now I have a a bunch of appointments for the doctors banging around up there too... I think, truly, that my brain is going to either fizz out and fry itself or explode (or possibly implode... can it do that?) if I don't sort myself out... hard to admit given my absolute pride in being a 'non-planner'.

I think of that movie (Multiplicity) where Micheal Keaton was cloning himself to get all the things he needed to do done... what I wouldn't give for a few extra 'Laurie's' hanging around.

Enough moaning... here's the latest plan/update on Joshua's recent medical status: We have a clinic visit tomorrow which will include an ECG. He will need to wear a 24 holter (it monitors the heart rhythms for a 24 hour period) and he will be sent home with a 'telephone transmitter' which quite honestly I have no idea what it is but I gather we use it during one of his 'episodes' to monitor what is happening during the event and then the information is sent to the hospital.

I also spoke with the neurology nurse practitioner who believes these 'events' could be seizures... (good thing we have that EEG booked). All in all... I haven't got a clue what's going on but I plan to find out.

Basically... it's just more stuff that will clutter an already cluttered brain. :)

Please, before you email with suggestions... I have a calendar on the fridge and on my phone... the issue is remembering to put the dates in... ;)

October 11, 2014

what am I thankful for?

It is thanksgiving weekend... it's been running through my head all evening... I don't need to sit and ponder what I am thankful for. Today it hit me like a freight train... I am thankful for my kids, my husband and for the friends who step in to help when life goes totally wonky.

My week started when on the way to pick up Kaleb from school I walked into  a crazy situation in which a man was shot multiple times and the shooters were running through the streets. Cop cars and ambulances raced past me to get to the scene... I was in a fog I guess, thought it was a scene from a movie until the principal from Kaleb's school came out and made me come inside to safety. At that point I was locked in the school office while the school when into lockdown. Kaleb on the floor below me, it was terrifying.  When we were finally given the go ahead to leave and I had Kaleb safely in my arms I was asked by a cop where I was headed, when I told him how far away it was he said 'carry him home, and walk quickly'. I can promise you it was only the adrenaline that gave me the strength to carry a five year old the 20 minute walk home, and I did it in about half the time.

My week ended (today) with what should have been a fun day with friends celebrating Kaleb's birthday party...

Just 45 minutes into the party Josh fell and hit his head on the concrete outside. He cried but he seemed okay at first, but within minutes he was asking to sleep, his skin lost all color, his lips so blue they were almost translucent. His skin was cold and clammy, and his eyes were rolling back in his head. He was losing consiousnes and it took all four adults to keep him upright and awake. We called 911 and before I could finish the call we had four police cruisers at the door, a fire truck and the EMS. We were rushed to Sick Kids where Josh was seen by doctors. I have only been that scared one other time and that was when we thought we were losing Josh when he was 6 months old.

Josh has had episodes like this before, not the fall, but the cold and clammy, the blue skin, the tired and lethargic state... but never like this. When I gave his full history to the doctors they did a few neurological tests and seemed satisfied that it was not a head injury that was the root of his problem.They believe it could be his heart.

About an hour or so after the event occurred Josh regained color, he became more alert, and then he slowly came back to himself, putting together a Lego toy and smiling and joking about his stinky feet. One would think nothing had happened to him.

Thankfully, we were released from hospital and Josh is sleeping peacefully in his bed (we just checked on him)...

Thanks to our friends who drove behind the ambulance to meet me there, Tim was able to continue Kaleb's party for him ... he got to have his cake and open his presents. When Josh and I returned home you could look around the house and assume nothing had happened. So, do I need to think about what I am thankful for this year? No. Not even a bit. I am thankful for our friends who changed all their plans to help us out when we needed them, I am thankful to Tim for stepping in and making sure Kaleb's birthday was still his special day, I am thankful for the first responders who came so quickly, I am thankful that this week is almost over... and I am thankful to God that Josh is upstairs in bed, where he belongs, safe (for the moment).

Please, pray for him and as as we navigate this new issue and try to figure out what is happening to our son.

I know that many of you were made aware of the situation today... the texts and emails were pouring in and I wanted to take a moment to thank you, your prayers are always valued.  Jill and Chris... you stepped up when you didn't have to, I have already told you this, but I needed to say it again, thank you.

waste of time

We had the appointment with the psychologist yesterday... to put it mildly it was a total waste of time and more frustrating than trying to clean the floors with a construction crew still doing dry wall...

My goal in these appointments is not to get Josh to stop waking me up in the night; for me, that would be a nice side benefit, but my goal is to help Josh learn to cope with his anxiety and worry. If he learns now that I don't want him to come to me when he's scared or has a problem then later, when he is struggling with something what is the foundation I have built for him to come to me??

I also don't want him lying in bed worrying and being scared, and feeling totally alone while does it. We are family, we face things together; even if it means waking up in the night (as much as I hate it). So, what to do now?

My plan for the moment is to buy books - a few recommendations I've been given - and use some of those coping tips to help him myself. I could use your prayers because this is going to a journey unto itself.

The one thing I did learn, was that it is totally normal for cardiac kids to be anxious and worried about death and surgeries and their hearts. So at least Josh isn't the only child out there struggling. I am hoping to find other moms going through the same issues so that I can talk to them about their coping strategies.

We also got our sleep deprived EEG appointment... and let me tell you, when they say 'sleep deprived' they really mean it... not just the patient but the family too. Turns out that Josh and I are doing this together too... We have to put him to bed at 10 (3 hours past his normal bedtime)... then, (and this is what will hurt)... I have to wake him up at 2am and keep him awake until his appointment at 8am... I can already see the coffee cups piling up just thinking about it. I am hoping and praying that we get some answers from that appointment that we didn't get from yesterdays appointment...

I think I have a million things to do this month (quite literally) and now I am taking on learning cardiac psychology as well. I am still not better after 2 weeks of illness and (if I could have a little pitty party for a second) I am so bloody tired!


pity party is now over... now it's time for a brand new five year old to celebrate at his birthday party!