I am blogging at 4:19 a.m. I am dead tired, and cannot fall asleep. For the past week, every time I have dozed off, Tommy has awakened. As if on cue, his little feet flew into the air as I began to write this blog. You see, Tommy does not meet the criteria for Medicaid to provide him a nurse. They have a waiver program, but that is only for mentally retarded children, or children on a ventilator. Since he can breathe on his own, he doesn't qualify. The fact he is BREATHING THROUGH HIS NECK does not count for anything. Neither does the fact he is on oxygen. Or fed through his stomach. Or has unrepaired heart defects. Or can't swallow. Developmental delays don't count. He is 10 months old and has the physical movement of a 5 month old!
Nope. No nurse. Just me. I cannot work, even if I wanted to. Good thing I wanted to be a stay at home mommy. That is about the only good thing about the situation right now. As his Mommy/Nurse I care for him 24/7. You would think I would care for all of my children 24/7, as you would yours. No, no...I mean physically doing something pertaining to his medical needs 24/7. Loading and prepping his feeding pump, administering medications, physical therapy, caring for his trach and gtube sites, and suction, suction, suction, suction, suction! The more it rains, the more gunk he gets in his trach! Oh, I forgot to mention that these are in addition to bathing, dressing, diaper changes, kiss the ow-ee, playtime, get up, and put to bed stuff of a typical baby too!
I am soooo frustrated. I KNOW if I close my eyes and start to drift off, he is going to start coughing and gurgling his trach. I guess I am just going to have to risk it. I am so sleep deprived, I can't even find an analogy for how tired I am! Wish me luck and at least a partial dream before he needs me again.
Oh, as a postscript, I just want to add how much I love Tommy. I would do anything for him. I just cannot be a good mommy to him and to the other boys if I am too tired to function. I just need a little help and the system is messing me over.
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Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries
1 comment:
MY HUSBAND AND I CAN UNDERSTAND EXACTLY WHAT YOU'RE GOING THROUGH.AT THE AGE OF 20 I HAD MY FIRST DAUGHTER,PERFECTLY NORMAL,AND GOT MARRIED.AT THE TENDER AGE OF 22 I GOT PREGNANT WITH TWINS,BORN AT 22 WEEKS ONE DIED AND ONE NOW LIVES WITH CEREBRAL PALSEY,MEDICAID DOESN'T RELLY HELP HER.SEVEN MONTHS AGO I GAVE BIRTH TO MY LAST DAUGTER WHO WAS BORN WITH DIGEORGE SYNDROME,HAD A TRACH PUT IN ON HER SECOND DAY OF LIFE.MEDICAID NOW DOESN'T WANT TO HAVE MUCH TO DO WITH HELPING HER.I DON'T THINK THEY UNDERSTAND JUST HOW HARD IT IS TO RAISE CHILDREN WHO HAVE DIFFICULTIES.CHILDREN LIKE YOURS AND MINE HAVE TO ENDURE CRAP THIER WHOLE LIVES AND YET THE ONLY THING THEY CAN SEEM TO GET FROM OUR WONDERFUL GOVERNMENT IS MORE CRAP!!!HOPEFULLY,OUR CHILDREN WILL OVERCOME ALL OF THIER TRAILS AT THIS POINT AND GROW TO BE POWERFUL GOVERNMENTAL PERSONELL SO THEY CAN SHOW THESE DUMBASSES HOW LIFE REALLY IS AND WHAT IT TRUELLY MEANS TO HELP PEOPLE!!!!!!I WISH YOUR FAMILY ALL THE LUCK IN THE WORLD AND IT'S NICE TO KNOW I'M NOT THE ONLY PERSON WHO THINKS THE SYSTEM SUCKS BUT LOVES HER CHILDREN THE WAY THEY ARE!!WE HAVE TO STRUGGLE FOR OUR OWN CHILDREN BECAUSE NO ONE ELSE WILL.
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