one thing I've wanted to write about for a while now, is how to survive a hostpital stay with your child... my sons last stay was a doozy, and a long one, so i finally put my fingers to key board and here we go...
I share with you our story and experience and the best advise I can give on these hard situations,
How to survive a hostpital stay with your child when they are sick??
answer is quite simple, COFFEE AND CHOCOLATE!!!..
ok, not the pair do help non the less.
In just the short 6 yrs of my boys life, not only has he endured hostpital stays but he's had 4 ICU stays as well, where each time, we didn't know if he would even make it home, each stay, being more severe then the last and longer.,
we've now travelled by car, by ambulance, small wing plane and helicopter, i will say this, if your child is sick and needs transportation, ORNGE is the team to get you there! they are without doubt, the most orgonized, accurate, knowledgeable, and all around great team to get you where you need to go.
Though my sons underlying condition is neurolical, his daily battle in life is respirator, his lungs are like a maxed out credit card, so it doesn't take much to send him into respiratory distress, resulting in hostpital stays and even ICU... though these times NEVER get easier, we mannage, im not only in full mom mode Im in a total battle feild , armed and ready to take anyone down
who DARE try and think they know my son better then me, or tell me what they feel should happen...they may be healthcare proffessionals, and some of the best I may add, but noone is an expert when it comes to your child... only a mom can possibley know their childs needs, thoughts... and what they are capable of, and how they feel and what they need!
Sadly there are somethings I can not control for my son, like his misfortune of getting sick whether Ait be just a common cold, or phnemonia or aspiration phnemonia, and noone can ever really tell you what it is, or what really made him so sick, my on going
fustration... my son is now on home oxygen since his last hostpital/ICU visit, altogether we were in 3 different hostpitals and 2 of them being two different ICUs, finally after a long battle and conatant fighting I got my son to Sickkids, the one and only hospital that I trust and always manages to make things right and send my boy home,only this time, the damage was a little more severe resulting in his need for oxygen at home, but this is not the first time, he was on it once before, but this time, I have a feeling it may be around a long time, not that its all a bad thing, it has helped him fight a few colds and gives him the ability to breath much more relaxed, and thats all I could ever want for him.
One thing I can not stress enough is KNOW YOUR CHILD!! even more so if they have special needs, they need you too!
Don't give up on them even when thigs are hard or even see hopeless, if you believe in them, they can over come anything, despite
what the doctors and specialists say... they don't alwyas know, and if you let go cause they tell you its whats best for your child, you just fall into thier trap,the child will decide when their time is up, and no machine or doctor or medmicine in the world will keep a child if they are ready to let go... I believe in this with my whole heart.. ive seen it.
theres a song I always picture my boy singing to me, so think if it while you read this, "have a little faith in my" by Joe Cocker, cause origonal is always better," this song, has helped me through some real hard times, but has always made my choice clear!(if i was just a tad smarter I would know how to add the song as background music)
so many times Ive seen a child or a teenager or even a baby , either down the hall from the room my son was staying in or even sometimes right in the next room, then after contant comostion and quiet in the hall way, you hear a mothers cry, saddness takes over the whole floor like a huge dark cloud or shadow of complete darkness, that child or teenager is nolonger here.
my heart breaks for that family, I look at my boy and hope he has no idea what is going on, and so glade hes not alone in the room, but I also can't help but wonder, was that child really ready to go?? could there have been a better way? could more time have pulled them through?? who made the final decision to say goodbye? i get that there are some circumstances where there really is no other option, but there are times when there is, i just know it,
as my boy gets well enough to leave that ICU, its real bitter sweat, while my boy as been given another chance, another mother is going home alone.
I do think about the possibilities almost daily that one day too, i will be that mom who loses her child, i don't just wonder how I will go one without him, but how do I tell his 7yr old sister, who tells me all the time, she is so glad to have him in her family, that she does not care how he is on the outside cause she knows hes just like us inside, who sits beside him at night to read him a story, who loves him, or to my 4yr old who for no reason will walk by him and kiss him on the cheek, or tell me funny stories he thinks hes telling him(even though he can"t talk), who tells him he loves him daily...
I don't think there is a way, he is so much a part of our family and included in our everyday life no matter what we're doing.
Hes got such a light, spirit in his eyes, the same eyes that talk to me, the same eyes that tell me hen hes happy, and when he's sick, they also let me know that when things seem at their worst, if i just hold on, "have a little faith in me" i hear them say, that he will be ok again, thats how I listen to my boy, and why I fight so hard to keep him in our life.
If i truley believed for a moment that his life was full of pain, and discomfort, like some healthcare professionals try and have me believe, then maybe I would do things diferently, ive had docotrs, tell me things like , "hes only going to keep on getting sick like this, or by keeping him alive, is only cruelty to the rest of your family and to him, so on and so on...my only respose to them, well.. the nicer version of it, is," do your job today that is to get him well aagai, if you can't, I will take him someplace that can," " I will worry about his future and the rest of my family"
I can go on and on by the things Ive been told, but I just forccus on my son and what hes telling me,
sometimes, when I get overwhelmed, and I just want to scream or just plain cry, I look for a quiet place, wich is hard to find in hostpital settings, I go to the hostpitals chapel, just sit, alot of the times cry as hard as I can just to get it out, and talk, to the one spirit that listens... God... i say a prayer, tell him if its time, then its time, I will let go, but please , don't take him from me, or his family that loves him so very much,"
and just by doing that, I re gain enough energy to get through another day, and the great thing about this trick is, I dont have to be in the hostpital to pray, cry, and begg, I can do it in the comfort of my own home, room, as I so often do...another thing Ive learned along the way, God is always there to listen...
when my boys in the ICU, I hate leaving him, very seldom do, but on occasion, I do try and sneak home for a night to re group with my other two kids, coming back to my boy feeling refreshed.
Its good to take a beak when you can, even if just a few hrs, it releases any negotive energy, frees the mind and spirit, giving you and your child the strength and fight to keep going.
don't get me wrong when you read this, not all doctors are so quick to want you to give up or feel they know whats best for your child and you, in fact for ever one doctor that has, lets say poor choice of words, you will meet 10 more great ones, ones that let you believe in your child, help, your child, be the only parent you know how to be, wich makes staying strong so very important, there is always someone you will believe in what you believe, we are so fortunate to have a few doctors, nurses, ect... who believe in my boys full potential, that know how hard my boy fights no matter how hard his little body fights against him, we are, truly greatful, who at the end of the day, let me be the mom i want to be.
my only other real advise on hostpital stays is, be friends with your nurse, they are the ones that help all day long, make sure your childs and your needs are met. The bigger the hostpital the busier the Doctors, so its had to get all your questions answered, so the best thing to do is write them down, but even better, ask your nurse, if they don't already know, they will find out and get you the answers you need.
At this point and time in my boys life, with no diagnoses, I've stopped searching for one, cause really it doesn't matter, with a diagnosed will not come a cure, and i've become ok with that, in no way am i giving up, just foccusing on him , today, and at the end of each day, im ever so greatful to have my boy healthy and home, and to be with all my family, cause i don't know what tomorrow will bring, i an just hope and pray it won't be good-bye,
but when that sad , fateful day should come, i will know it was my boys decision , and I did all i know how to get him as far as he got, i have visions of him , freee, running and playing, his radiated, overmedicated body finally free from all the toxins he undures in daily life, and that one day, he will be waiting for me, open arms, and the words,"mommy"
today, we foccus on today, thou never in denial like im so often accussed of, but trying to bring a sense of normal to his life, and the life of my other 2 kids.
For now, our life is complete, having my boy with special needs as completed it, I ould not imagine life any other way, so greatful I was chosen to be his mom, we can all it syndromes, Genetics,disease, what ever medical term they find, but they are placed on this earth for a reason, how , doesn't really matter, as long as their accepted and loved!
So now that ive rambled on,(wich reminds me of one of my fav. songs...ramble on-led zepplin, just thought i would throw that in there:), I will end with one last piece of advise from experience,
it really is important to eat properly and stay hyderated during such times, I didn't follow just advise , its hard, at times, id rather puke then even eat a single bite, but by not doing so, by the time we got home, and the dust settled, I ended up so very sick, thou the severe weight loss may have been the one good thing that came from such a hard time, it came with a heavy price of falling very sick for days, by the time my ammune system caught up with me...SO NOT worth it!
And one last note: that old saying stands true, don't judge a person you don't know, you never know the battles they may be facing behind their smile, frown, or closed doors...
