damiensmom
New member
I READ YOUR POSTS ALL THE TIME LOOKING 4 SOMTHING I RELATE 2 OR SOME SORT OF ANSWER 2 MY MANY QUESTIONS BUT I AM STARTING TO REALIZE THERE ARE VERY FEW DEFINITES I HAVE A 4 MONTH OLD BORN 2 MONTHS PREMATURE EXTENDED TUMMY CF DIAGNOSIS WITHIN A MONTH HE WEIGHS 8 POUNDS NOT BAD BUT WE JUST GOT HOME FROM HOSPITAL DAMIEN GOT A SLIGHT FEVER AND WE WENT TO EMERGANCY AND X RAY SAID PHENIMONIA SORRY CANT SPELL THAT TINY SPOT ON LOWER LUNG WE HAD BEEN 2 OUR CLINIC VISIT 5 DAYS PRIOR NO WARNING FROM HES TEAM ANYWAY I DRIVE 4 HOURS THERE 4 HOURS BACK IN A DAY 4 CLINIC SINGLE MOM AND A TEN YEAR OLD WITHOUT CF AND I STAY HOME WAITED A YEAR 2 GET MY APARTMENT 4 12 DOLLARS A MONTH AND PRAISE GOD CAUSE I HAVE DAMIEN 2 LOVE AND CARE 4 . ANYWAY THEY HELICOPTORED HIM PHENIOX AND BY THAT NIGHT IT HAD CONSUMED HES WHOLE LUNG IN ICU TUBE IN SIDE AND THE MACHINE BREATHING 4 HIM SO SCARY AND HEARTBREAKING NOT TO MENTION THE REALITY CHECK SO SOON IS ALL I COULD THINK AND SHOCK BOY OH BOY UNBELIVABLE HADNT I TOOK ALL POSSIBLE PRECAUTION HADNT WE KEPT MY BIGBOYS FREINDS FROM COMING OVER TO POSSIBLY GIVE MY BABY A BUG WASHED HANDS ECT.... WHERE DID I GO WRONG WHAT DIDNT I DO I WAS TOLD HE WOULD OF HAD THIS HAPPEN REGARDLESS HARD 2 ACCEPT I HAVE NO CONTROL OVER SOME THINGS MANY THINGS WELL HES FUNCTIONING ON 1 LUNG AND OXEGON WE WERE HOME 4 CHRISTMAS AND 4 ALL THAT IS MERCIFULL PRAISE GOD WERE HAVING A ENZYME AND FORMULA TO HOW MANY OUNCES SINCE HE WAS EATING 2 OUNCES 27 CAL PER WHOLE ZYMEE WELL SINCE WE BEEN HOME THAT JUST AINT CUTTING IT HE WAS DISCHARDED AD LIB 4 MEALS AND HE WAS CONTENT AT4 OUNCES BUT I NOTICED CHANGE IN HOW MANY NUM 2S LESS THAN USUALL HUH TODAY 3 SMALL WATERY AND GAS AND THAT HAUNTING FEAR OF RAVENOUS APPETITE AND CRING NONSTOP ALL IN LESS THAN 24 NOW MY THEORY IS TO MANY CALS 4 FOUR OUNCES AND 1 ZYMEE IF HE EATS MORE IN ONE SITTING MAYBE DROP 2 24 CALS AND 1 ZYMEE AND HE COULD ABSORB AND IT NOT PLAY HELL ON HES LIVER ACTIGALL 3 TIMES DAILY THE CRYING ITS PAIN IT SUCKS I NEED BETTER OR MORE DETAILED INFO SHOULDNT THEY HAVE BEEN MORE INFORMITIVE AND GIVEN ME SIGNS AND WARNINGS ON HES EATING PER DISCHARGE THANK GOD CLINIC IS IN A FEW DAYS AND HES NUTRITIONIST SHOULD HELP I ASKED THE NURSE DOC EVERYBODY HAS HES CF NUTRITIONIST BEEN DOWN 2 SEE HIM NOT THE HOSPITAL NUTRITIONIST , IM A LITTLE FRUSTRATED WITH THAT BUT I NEVER FEEL LIKE ANYONE HAS EVER BEEN THOURUOGH ENOUGH INCLUDING ME . MY SPELLING LEAVES MUCH TO BE DESIRED ANY FEEDBACK ON HOW TO KEEP MY BEAUTYS PAIN DOWN AND ABSORBTION UP UNTILL T GET TO CLINIC<img src="i/expressions/puppy_eyes.gif" border="0">