Contemplating our health care system...

With having a child that has health issues we are literally emersed in Canada's health care system as a way of daily life.  If anyone sees the cracks that crumble in this country is is us, and any other families that have children that have health problems.  I have handled it all with my head held high and been thankful and greatful for what we have and been lucky to be in a city with a world renowed hospital.  Well today that has changed right down to my core.  I sat by when lack of communication cause huge riffs in our family when trying to get Adam's heart surgery planned (which is still on hold atm due to needing more medication to lower his pressures thus making it safer) I was shocked departments all within the same hospital weren't able to communicate with each other, pick up a phone, hell walk down the hall to have a simple conversation.  I was shocked when I found out that out PICU Nurses government funding is so freaking great that they need to buy their OWN pens or pencils to chart our children!  That's right people our Pediatric Intensive Care Unit doens't even supply our Children's nurses with pens or pencils to chart our children's health and progress.  This is the Unit that deal with our Critical Children!!  I dealt with this things and didn't really say too much until now...... There are more things but if I continue on it will take away from a serious issue!! Today our family was informed that Health Canada has denied my baby boy from releasing a life safing drug due to the fact that Bayer will not release it to new patients.  Yup that's right, another kick in the face by the Canadian Government Health sector who apparently it doesn't matter that this will change the life of a toddler who was born with a rare, degenerative, agressive heart disease.  Bayer doesn't want to give my child a reasonably decent life, no instead of providing us with a non invasive treatment they would rather see a central line inserted directly into his heart.  My little man is a very active boy and besides taking 3 heart medication and 2 sleep apnea medications he leads a typical toddler life.  This drug Illoprost would be administered in an inhaled treatment 6 times a day.  Yes that is a bit heavy as he already takes a lot of medicine but it won't hault him from swimming, baths, water parks etc as this other treatment will prevent.  There is another medication that can be taken 4 times inhaled yet thus it is not available in Canada.  So now what the hell do we do?  Give in to a huge drug company who has written off my 3 year old son to make more of a profit?  Who won't give an actual reason as to why they will not provide a non invasive life safing treatment to new PAH patients?  I am hoping that they have a serious change of heart as this little man deserves the world.

Awesome Times

Lately things in our lives have been pretty good.  There are the typical financial stresses, surprise bills, and trying to figure out where we will get the $ to fund Adam's new machine coming and the masks involved.  Other than that it has been amazing.  Adam is talking like no one can believe, he's articulating and seems all around happier.  There has been less nightmares though there are other issues that seem to have arrived there.  In less than a month Adam will be 3 and he seems leaps and bounds ahead of that.  We are building tracks and playing trains, the imagination is outstanding, reading like crazy and doing more crafts!  I am so proud of him, he is such a good kid with a great temperament.  What almost 3 year old likes to go and look at mattresses?!  Mine does, yuppers, he's all about finding himself a bigger bed.  I think I am more bored with it than he is.  Only time will tell what the calm before our storm will entail lol.  All I know is I have a thomas themed B Day to plan with some serious outdoor fun!