What CF really is....

CF is hard to explain. Many times, I get asked what CF is and my first 

answer is typically "it's a genetic disease of the lungs". But really, 

CF is so much more than just the lungs. 

It involves multiple facets and specialties and areas of the body, lungs, 

pancreas, liver,kidneys,  physical and mental and emotional. It's coughing 

and infections and sputum and struggling to breath. 

It's about digestive and tummy aches and blockages and extended times 

in the restroom. 

It's about food and calories and weight.  It's about growth and height and 

being stunted. 

It's about looking younger than you are and having medical devices 

wherever you go. 

It's about post traumatic stress disorder and regression and fear and 

trauma and blocking things out and not being able to forget. 

It's about ports and gtubes and IVs and breathing machines and 

vests and airway clearance and 

treatments and Meds upon Meds upon Meds.

 It's about what's covered and what's not and what hoops to jump 

through and who to call and what letters to write and who to prove 

what is needed and which option is best and what's available 

and what's not and generic and name brand and politics. 

It's about cost and coverage and people making rules who don't 

understand the disease and hope in things that may never come or 

be approved or that you can't afford.

 It's about guilt and decisions and stress and complications and 

unforeseen circumstances and sleep deprivation and beeping machines. 

It's about a small room that becomes your home several times a

 year and a lack of privacy. 

Its about choosing to continue medication that they are allergic to. 

About endless doctor visits and hospital stays. 

It's about missing school and 504's and choices to mainstream or 

homeschool or online school or home bound. It's about advocating 

and research and working together and trying new things and last ditch efforts. 

It's about surgeries and invasive procedures and pokes and probing. 

It's about endless questions and listing endless Meds and their dosing 

off the top of your head. 

It's about teaching those around about something lesser known and understood. 

It's about trying to stay married and paying attention to your non CF'er and the 

guilt of being away and if you should have more kids. It's about working 

or not working, being able to afford Meds and vacations and paying bills. 

It's about staying the course and not giving up despite being weary and 

overwhelmed and depressed and teary and exhausted and fearful. 

It's about hope and doing everything you can to not lose it despite 

all this disease brings your way. It's about holding your children who's 

turning into a young woman and man and wiping their tears and whispering 

a prayer into their ears knowing there's nothing you can do to stop a disease 

that is so much more than their lungs! 

To mom of chronically ill children

To the Momma of a Chronically and Critically Ill Child,

I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with a beating heart. I’ve seen you pray, hope, and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your babies with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes, this is the kind where no one can assure you that your child is going to be okay.

You are brave. You are strong. You are loving.

You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by, dropping NG tubes, replacing feeding tubes,  inserting ports, giving IV meds at home. 

You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist. You call your children’s hospital your home away from home, and while the rest of the world may find that sad, you see the hope. It’s the place that gives your child a chance at life.

I see you, momma. And you are loving that child unconditionally, just as you should. You are standing beside them come hell or high waters, and you are doing a good job. You are giving them the best.

You are their cheerleader. You are their smile maker. You are the one that knows their favorite songs, toys, games and movies.  You are the one that knows how to calm them down, how to hold them, how to love them best.

While other parents know everything about their child’s sleep habits, you know everything about your child’s vitals– where their normal sats should be, what their normal lung functions are, what their resting heart rate is, their normal pressures. While other parents can talk about their kid’s feeding schedules, you could talk all day about your kid’s anatomy, what surgeries are next, or what treatments are on the radar. While other parents are teaching their kids to crawl and to walk, you are teaching teaching them  how to swallow 50-60 pills a day or to bear weight on their legs and rebuild their core from weakness of lying in a hospital bed all day after surgery. While other parents look forward to going out on a date night without kids, you look forward to the moments when you can grab enough hands to shuffle around a bunch of machines and a hospital bed to just hold your baby.

You are brave. You are strong. You are doing a good job.

You are a mom. You would do anything for your children.  And some of you have to brave the path that no parent should have go down. Instead of debating the best way to introduce solid foods to a baby, you are making decisions with doctors on quality of life for your child and which breathing meds are the best ones for your child. You are a mom. You would do anything for your baby, even when it means they are in heaven and free and you are the one left here to suffer.

To those of you, I see you. Hold on to hope.

This is not a path anyone chooses. You did not do anything wrong to make this happen. Your child did not do anything wrong to make this happen. This does not make you worse or better than any other parent. It just makes you different. You love your child the same, you just experience things differently than the “normal”.

Keep on doing what you are doing, loving that kid no matter what.

You are doing a good job.

You are a good mom.

Love,

A Momma Who Knows

Just one of our CF struggles

It's a new year. And due to high medication costs, insurance decides to drop both Lynsey and Jon. Found another insurance company, but insurance rejected ALL of their meds, so our amazing CF Drs and nurses sent in authorizations to get them approved. Then pharmacy called saying they had trouble ordering these meds because most of them are specially and cannot order. So yesterday after 4 hours I transferred half of their meds to CF pharmacy who specializes in CF meds..... Praying now insurance approves!!!!! Just another struggle we face every year. Next is paying out of pocket and co pays, but that should be taken care of after these meds are ordered!!! Without insurance these meds listed would cost us around $30,000 per child per MONTH!!!!!!! We need a cure. Please pray for this insurance issues! 

Daily medications:
Inhaled:
Dueoneb 4xday ( 9/1/5/9)
Pulmozyme 2xday with PEP (1pm/9pm)
Hypertonic saline 2xday (9am/5pm)
Tobramyacin 2xday
Advair 2xday
Cayston 3xday
Vancomycin 2xday
Vest 3-4 xday ( 1pm/5pm/9pm)
Acapella 2x day (9am/9pm)

Po meds:
Bactrim 2xday
Viokase 10 pills a day
Singulair
Allegra
Vitamin d 4pills 2xday
Vitamin k
Adek vitamins 2x day
Benadryl 25mg 4 xday before vancomycin
Omeprazole
Pepcid 2day
Prednisone 40-50mg day
Zenpep enzymes 5 tabs with all meals and snacks and tube feeds(30/day)
Flonase 2xday
Saline rinses 3-4xday
Bactroban
Miralax 2xday
Colace 1xday
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
Merpenum 3xday
Tobramycin 2xday

CF Mom

I am 50% genetically responsible for my two kids having Cystic Fibrosis and I am 100% responsible for my unconditional love for them.

I’ve played hooky with my kids on occasion while I ignored the school’s warnings of “an illegal absence.” I taught my kids to be responsible  to work hard, and that CF would never, EVER, define them.
…because I am a CF Mom

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’ve heard the long raw cough that rudely took away the ending of a hearty laugh. 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 much stronger stomach. I’ve handed off thousands of pills, syringes, and nebulizers while struggling with them to be 100% compliant. I’ve tasted the salt on their cheek as I’ve kissed them good-bye. I’ve smelled the putrid stench of feeding tube formulas, the sour smell of many strains of bacteria expelled from their lungs, or the sterilize stink of the all too familiar hospital.
…because I am a CF Mom

It was heartbreaking to explain to my child “Don’t move” as the nurse made their 4th attempt at starting an IV, or convincing them that 3 weeks isn’t ‘that long’ to do IV antibiotic treatment over their already short summer vacation,

I told my kids they can do anything regardless of CF.
Fishing, softball, basketball.....
I told myself everything will be ok
…Because I am a CF Mom

I give hours of treatments and Feedings, because I’m a CF Mom
I allow pity hours, not days, because I am a CF Mom
I get up each morning
…Because I am a CF Mom

I am broken on the inside because I am a CF Mom
I am fierce on the outside because I am a CF Mom
I promise my soul that WILL NOT rest until I am no longer a CF Mom!