Friday, March 7, 2014
CF mom
I am 50% genetically responsible for my two kids having Cystic Fibrosis and I am 100% responsible for my unconditional love and care for them.
I’ve played hooky with my kids on occasion to allow them some rest time and freedom” I taught my kids to be responsible, honest and to work hard, and that CF would never, EVER, define them.
…because I am a CF Mama
I may not know what it’s like to HAVE cystic fibrosis but I certainly know what it’s like to LIVE with it. I hear the long wheezy, junky cough that rudely took away the ending of a hearty laugh ot awakens from peaceful sleep, I’ve spent countless hours and witnessed the incredible effort it takes just to START their day, while all I need is a strong cup of coffee and a stronger heart. I’ve handed off thousands of pills, syringes, nebulizers, sinus rinses, Feedings while struggling with them to be 100% compliant. I’ve tasted the salt on their foreheads as I’ve kissed them good-bye. I’ve smell the horrid stench of feeding tube formulas, the sour smell of many strains of bacteria expelled from their lungs, gagged at the nasty mucus that they cough out of their lungs.
I’ve played hooky with my kids on occasion to allow them some rest time and freedom” I taught my kids to be responsible, honest and to work hard, and that CF would never, EVER, define them.
…because I am a CF Mama
I may not know what it’s like to HAVE cystic fibrosis but I certainly know what it’s like to LIVE with it. I hear the long wheezy, junky cough that rudely took away the ending of a hearty laugh ot awakens from peaceful sleep, I’ve spent countless hours and witnessed the incredible effort it takes just to START their day, while all I need is a strong cup of coffee and a stronger heart. I’ve handed off thousands of pills, syringes, nebulizers, sinus rinses, Feedings while struggling with them to be 100% compliant. I’ve tasted the salt on their foreheads as I’ve kissed them good-bye. I’ve smell the horrid stench of feeding tube formulas, the sour smell of many strains of bacteria expelled from their lungs, gagged at the nasty mucus that they cough out of their lungs.
…because I am a CF Mama
It is heartbreaking to explain to my child “Don’t move” as the nurse made their 4th attempt at starting an IV and accessing their port, checking their blood sugars, getting insulin shots or convincing them that 3 weeks isn’t ‘that long’ to do IV antibiotic treatment and breathing treatments and airway clearance 4 times a day over their already short summer vacation, or Christmas, thanksgiving and even their birthdays..... Because I'm a CF mama.
I told my kids they can do anything regardless of CF.
Fishing, softball, basketball, snowboarding....whatever they put their minds to,
I tell myself everything will be ok
…Because I am a CF Mama
It is heartbreaking to explain to my child “Don’t move” as the nurse made their 4th attempt at starting an IV and accessing their port, checking their blood sugars, getting insulin shots or convincing them that 3 weeks isn’t ‘that long’ to do IV antibiotic treatment and breathing treatments and airway clearance 4 times a day over their already short summer vacation, or Christmas, thanksgiving and even their birthdays..... Because I'm a CF mama.
I told my kids they can do anything regardless of CF.
Fishing, softball, basketball, snowboarding....whatever they put their minds to,
I tell myself everything will be ok
…Because I am a CF Mama
We spend some much time at doctor appointments that they feel like family
I give hours of treatments and Feedings, because I’m a CF Mama
I allow pity hours, not days, because I am a CF Mama
I get up each morning, stay up late each night
…Because I am a CF Mama
I am broken on the inside because I am a CF Mama
I am fierce and strong and smile on the outside because I am a CF Mama
I promise my soul that WILL NOT rest until I am no longer a CF Mama!
I give hours of treatments and Feedings, because I’m a CF Mama
I allow pity hours, not days, because I am a CF Mama
I get up each morning, stay up late each night
…Because I am a CF Mama
I am broken on the inside because I am a CF Mama
I am fierce and strong and smile on the outside because I am a CF Mama
I promise my soul that WILL NOT rest until I am no longer a CF Mama!
Daily meds
Have you ever wondered when you would take your last breath and what it would be like? Thousands of adults and children struggle with this fear everyday, because they have an uncureable disease called cystic fibrosis.
Cystic fibrosis needs a cure for lots of reasons but the two most important reasons to me are two of my children who have been fighting this battle everyday of their lives, never know when they breathe in a horrible bacteria that may take their last breath! I can go on and on to give you the medical definition of this disease, but that does not do justice to the realities of it all.
Daily medications:
Dueoneb 4xday ( 9/1/5/9)
Pulmozyme 2xday with PEP (1pm/9pm)
Hypertonic saline 2xday (9am/5pm)
Tobramyacin 2xday
Ad air 2xday
Cayston 3xday
Vest 3-4 xday ( 1pm/5pm/9pm)
Acapella 2x day (9am/9pm)
Po meds:
Singulair
Allegra
Vitamin d 2xday
Vitamin k
Adek vitamins 2x day
Benadryl 25mg 4 xday before vancomycin
Omeprazole
Pepcid 2day
Prednisone 40-50mg day
Zen pep enzymes 5 tabs with all meals and snacks and tube feeds(30/day)
Flonase 2xday
Check blood sugars before meals and 2 hours after and mid tube feeds
Humalog Insulin injections if BS over 150
IV antibiotics when sick:
Vancomycin Iv 4 xday
Vyoxx IV 3xday
Ceftazadine IV 3 xday
Cystic fibrosis needs a cure for lots of reasons but the two most important reasons to me are two of my children who have been fighting this battle everyday of their lives, never know when they breathe in a horrible bacteria that may take their last breath! I can go on and on to give you the medical definition of this disease, but that does not do justice to the realities of it all.
Daily medications:
Dueoneb 4xday ( 9/1/5/9)
Pulmozyme 2xday with PEP (1pm/9pm)
Hypertonic saline 2xday (9am/5pm)
Tobramyacin 2xday
Ad air 2xday
Cayston 3xday
Vest 3-4 xday ( 1pm/5pm/9pm)
Acapella 2x day (9am/9pm)
Po meds:
Singulair
Allegra
Vitamin d 2xday
Vitamin k
Adek vitamins 2x day
Benadryl 25mg 4 xday before vancomycin
Omeprazole
Pepcid 2day
Prednisone 40-50mg day
Zen pep enzymes 5 tabs with all meals and snacks and tube feeds(30/day)
Flonase 2xday
Check blood sugars before meals and 2 hours after and mid tube feeds
Humalog Insulin injections if BS over 150
IV antibiotics when sick:
Vancomycin Iv 4 xday
Vyoxx IV 3xday
Ceftazadine IV 3 xday
Subscribe to:
Posts (Atom)