A day

Adam has really taught me a lot over the past year.  Ever since his diagnosis I watch him in awe because he does not let anything slow him down.  His breathing has become heavier as of late but it has not slowed him down.  This tells me the battle is coming but it is not fully here yet.  Earlier this year was rough on him and it is soooo good to see him running around and doing so good.  He has taught me the life is worth living every day, the only ones left hurting are the one's left behind and that there is always hope for the future.  Life has been interesting lately.  Adam has been doing alright, Aaron had lost his job which cause issues but has now recovered and started working at a new job and I have been busy at my amazing job.  It sure has some interesting days of people either showing up an hour early to an interview and expecting to be seen because they showed.... I usually have others scheduled sooo that doesn't work people and I don't recommend it.  Interesting personalities have shown up, some who look like they would waaayyy tooo interesting and really instead of the pink or purple hair, pierced face, torn sneakers with a story and rainbrow bright attire there is no personality there at all.  As someone put it my job is like being the judge of an American Idol yet it's for jobs lol.  We do believe there is a job for everyone out there, though not always through us.  The most interesting part of my job is putting my personal feelings aside and assessing the people I see, they generally don't work with me thus I have to think of everything differently including the dynamic of the job elsewhere.  Needless to say my day is filled with differences all day long.  When I get home it is then filled with Adam!  The crazy, eccentric little boy that is my darling filled with questions.  Yes some days I wish my ears were pencil sharpeners so that I could jam pencils in and not have to listen... however if I really stop and listen it is amazing what he is learning and wanting to learn.

Update on Adam

Well it has been an emotional roller coaster regarding our wonderful son.  Adam has generally been doing really well which gives my heart such a full and happy feeling.  Adam has obviously recovered from his tonsilectomy/Adnoidectomy and has since had 2 echo's that unfortunately show no changes regarding his heart.  We were really hoping that it would make a difference limiting his Obstructive Sleep Apnea and that maybe that was the cause of his disease, or contributing but alas the numbers right now show that isn't the case.  Luckily though things have not worsened just stayed the same.  We have re applied for the inhaled drug that Adam was denied, PHA Canada has spoken with Bayer and they are now trying to get it on a Special list for those who really need this treatment as they have no plans to try and get it approved by Health Canada.  I know a girl in BC got this drug so fingers crossed for Adam he gets it as his other option is to start on IV Medications.  We have just upped his current medications in the hope that it will help as for the first time Adam had some really bad days that had me worried.  I am thinking it is time I get an oxomiter machine to test his levels on days like that to determine if I take him to the hospital for 02 or just lay low.  I am determined to give Adam a typical life that will have hospitals and meds but in all other ways is just another day in the life of a kid.  Health Canada makes me so angry as there are so many other treatments elsewhere in the world that we can't get here that would be beneficial and give children a chance of swimming, normalcy, lack of equipment, tubes, infections, tape and less worry.  Our children are supposed to be getting some of the best treatment in the world and there is so much lacking!  The uncertainty in life makes me cry often as even the idea of a lack of understanding at school makes it hard.  Will Adam be teased for all sorts of medications or as his disease progresses for not being able to do things?  Will teachers understand or will they push him to unsafe levels because it is such a hidden disease.  Will there finally be a treament of the disease in his lifetime or will transplantation be our only true final option?  It is terrifying to think that ultimately in the end replacing his lungs and heart may be the only thing that will allow him into Adulthood.  In every other way Adam is playing, laughing, running, being crazy and finally potty training!  That child has humbeled me in so many ways with always having a smile on his face, wanting to help and pushing through even on those tough days.  I am starting to understand his disease more and more as I connect with more Adults and am now even more understanding to when he whines for no reason or what seems so, his pulmonary cough, his ups and downs in just a day, his sleeplessness, and the crazy "medicine energy" which usually means the next day is going to be a crash.  I was right about how up to 3 weeks after starting a new medication or upping meds makes him a nut bar, apparently that is common.  My now 3 year old is such an amazing child, an inspiring boy and truly the face of how hidden this disease is.  I know as a parent there is always so much uncertainty with their decisions, my hope is that his decisions are what makes life uncertain as opposed to health holding him back.  If my boy has the kindness to now put a bandaid on my forehead to "make me better" from a headache I hope that it continues through life and that he doesn't become juilted with the cards he has been dealt.  If he carries that through his life he will change the way people look at this disease, sick children and give hope to so many that those who have been dealt awful cards can surpass the negativity and embrace the positive.

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!

Moms Caring 4 Moms: Feelings of uncertainty

Moms Caring 4 Moms: Feelings of uncertainty

Feelings of uncertainty

So we are at another stalemate and not too sure as to what direction we will go in.  After Adam having his tonsils out and all the trouble we had there relaxing in this house hasn't been the easiest.  He's much more mellow yet has a consistent energy level which is so nice to see oh and now he never shuts up lmao.  It's been pretty amazing in that sense.  Watching him and talking to him feels so good because he acts like such a little man.  We had his echo yesterday and everything is generally still the same.  There has not been any changes since his echo when he had his surgery so it wasn't the outcome we were hoping for.  He will be presented at the next cardiological conference in the beginning of May for the opinions of what we do next.  We may not be doing anything but lots more medications though it may not apply to Adam.  Right now he is functioning quite well and his heart is still squeezing well which is the most important thing though there is some more thickening of his heart wall meaning there is more blood flow through the lungs which could pose a problem down the road.  Adam's hole is very big so we won't know how much of an effect it has on his disease until we go in and make the hole smaller with open heart surgery and then we have to cross our fingers that it was the right decision to make in the long term.  The closing of the hole is so dangerous for him it's unreal and they are afraid that putting him on a heart and lung machine during surgery will be even more dangerous because his pulmonary pressures are so shakey so ultimately in the end we have been left with more uncertainty and questions than before.  I don't even know how to feel anymore, I don't know what direction we are going in and I am not sure how much stress I can handle.  This was the first time the Dr and I talked about the fact that people with Adam's disease are at an increased risk to literally just drop dead and that him getting better is more of a dream than a reality.  He will have a lot more medications in the future I'd say and thus far Adam's dream of being a pilot certainly will not be a reality.  Even though I want to have another child I am now torn and leaning towards that not happening.  There is so much stress and uncertainty that I don't know if I would be able to handle bringing another child into this world and always hoping and praying to not be saying goodbye to my first born.  There may be surgeries, there may not, there will be lots more procedures and tears and fears and right now all I can hope is that Adam will remain the same and not get worse.  He's only 2 with an entire life time in front of him and I know in life there are no guarantees especially with where your kids will go in life, with Adam it feels like things are on a string that could literally snap at any time.  Not only do I not know where he will go in life, what he will do I don't even know how long I have with him.  I don't know how long his life will go on for, how "normal" it will be or how many things we will have to hold him back from.  It breaks my heart and makes me want to spend as many moments with him as I can which makes working hard some days.  I love my job which is why I still go and I know how good it is for Adam to go to the dayhome and get away from me lol.  If I had an awful job or dreaded it or saw no future in it I would have left a long time ago to take care of my boy even though it would be soo hard financially.  I am just happy to know that in May we are taking a family weekend trip to Calgary to bring Adam for a Thomas train ride and to play with his buddy.  All I can do and all I do to get through is to cherish the great moments we have and the positive things we can plan and do.  He is my world and there is so much still to do.

Life....

Well it sure has been an interesting period of time over the past little while.  Between the appointments, cancelled surgeries, Adam having croupe and then his tonsils finally coming out there has been a lot of ups a downs.  Adam's croupe was a bad bout and he needed treatment for it which pushed his tonsilectomy back.  It has finally happened and he had surgery on the 25th.  He spent one night in ICU doing well except for having to wake him every few hours for medications. We spent another day in Cardiology where Adam could see the LRT so he was excited to see the trains and then we came home.  36 hours later we were rushing back due to Adam bleeding and bleeding a lot.  One of his clots let go way too early and he was bleeding into his belly.  Luckily I had him laughing otherwise I wouldn't have known until the dreaded time of him puking blood, thankfully that was saved for the ER though still terrifying.  It was sooooo scary to see him like that, going pale, going lethargic and the Dr's not liking his pulse.  All I wanted to do was help my son and I couldn't do anything but hand him back over to surgeons and hope for the best.  Luckily Aaron and I acted fast and got Adam there right away because they were able to help Adam and not have to give him a blood transfusion though he was close.  It was literally the worst case scenario that happened.  The shining light is that Adam is better and is soooo amazing through all the hard and scary times.  He is still recovering and after what happened it's been hard to relax until we know he is better 100%.  I am still having nightmares about the ER and seeing him covered in blood, so it's been hard to sleep.  I feel so much love for my son and I am so happy that he is alright in which it also humbles me because some of the other children in ICU may not be the case.  We are very fortunate to have a child who is 2 and is able to function well at home.  I also learned to let go a bit as Aaron did the night shifts at the hospital to let me go home and sleep so we both have a new perspective as to what each other experiences.  I will now be able to go home when the big surgery comes which is going to do me some good.  For the next while Adam gets to be a kid.  With everything that has happened Adam's heart is still functioning very well thus no rush for surgery, therefore surgery will not be most likely the end of June.  We'll make sure to get in as many good times before then including hopefully a camping trip with Children's Heart Society.  As scary as things are we are finding great support networks and have been lucky to have such great friends and for that I thank you!