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  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

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Just a cold

Many of you may wonder why a cough is such a huge thing with a person that has Cystic Fibrosis, and so I thought it would be interesting (mostly for my own sanity) to write what goes on in many of our minds when there is a cold on the horizon. With a non-cfer a cold produces lots of extra secretions in the way of sneezes, and runny noses which in turns often causes a cough from the junk running down the throat and settling in the lungs.  A person who has Cystic Fibrosis they have those same reaction with their secretions, only to start with theirs are twice as thick (the cftr gene defect is responsible for that).  The  process of easily coughing it out  has been greatly impaired.  I liken it to shaking molasses out of a jar, or the old fashioned ketchup bottles that we used to have to hit the bottom to get the ketchup out.  So without the ability to get the mucus/secretions totally out (exercise and her vest shaking her up for hours helps, but only so much), the mucus provides a perfect breeding ground for germs.  The basic defect of CF is a problem of there not being enough salt in the secretions to thin it to a texture that is moveable. Creating dehydrated lungs and airways (as well as thickness through the entire body fluids  and organs). Then the cycle of inflammation continues to spiral downward.  The mucus leaves “trash” (debris) in the lungs.  Her body sends in “trashmen” to clean it up, but they are not strong enough to clean it up so they die, and create more trash and more are sent in and the process continues with out strong antibiotics.

This week Shiloh came down with a cough on Monday evening.  (The first thing we start to do is figure out where we got the cold from…why…I am not sure other than to make sure that we do a better job next time of protecting ourselves.) So our protocol is to start making sure that everyone stays clear and washes their hands like crazy (once again, I don’t know why, once it is in your house it is near impossible to get ever germ washed, but we still like to try I guess.=o ) Once  it hits Rachel…the game changes drastically.

Rachel started coughing on Wednesday afternoon.  We constantly monitor the sound, the frequency, and her breathing during the initial stages to know whether we need to call the doctor.  (So far, we have only had a few times that she was able to kick a small cold with exercise and lots of extra percussion beating on her lungs so that the junk doesn’t settle in and cause bacteria to grow and flourish).  99% of the time we have needed strong antibiotics to help her to be able to breathe along with the constant percussion. The doctors know that her body doesn’t have what it takes to fight off the infection as well as a virus.  A person with Cystic Fibrosis’ lungs are in a chronic state of inflammation so a cold puts them over the edge.  I am still always amazed at the way a cold can sound rough on healthy lungs and then be ten fold on Rachel’s. It also usually hits her really fast.  She may sound okay one day and the next day it is non-stop!

We started her on abx’s yesterday afternoon, and then made her run, jump and stay active.  She of course coughed and coughed, but with a smile on her face most of the time. I am equally amazed at how her body keeps going and most of the time with a sweet spirit despite feeling rugged.  One of our doctors commented on how she would only ever treat pediatric cystics because when they are little they don’t complain, and barely know that life is suppose to be different. (I am hoping and praying that there is a cure before she does know a difference.)  Last night she had one of those non-stop coughing fits, that even after her breathing treatment, vest, and hand percussion- did not go away.  Finally before bed she threw up.  That is when you know that the junk in her airways is thick and yucky, and that it is going to be a tougher battle as far as colds go.  More information that you want to know, but it is amazing the stuff that can be spit out!!!  No wonder it is a breeding ground for bacteria.

She coughed hard through the night. At midnight through about 3am I went in to sit with her, mostly to monitor her breathing.  Her airways were really sounding tight.  On a normal person the cold may just sound junky and rattly, but on Rachel her CF makes her airways really tight and her cough is more of a bark.  That tightness is scary to me, because she has had times of not being able to get out the junk she is coughing up and choked on it, not to mention with airways that restricted her oxygen level is diminished.  Anyway, after about an hour of rubbing her back, praying over her and trying to get her back to sleep, her coughing did settle down a bit. She still coughed, but it was not quite as hard and tight.

Praise the Lord for morning!!! One day down on this cold!

Just a cold to everyone else means that you give some medicine and a little extra love and care and wait it out.  With CF, just a cold means…hours of treatments added to your already busy cf day.  Normally we do about an hour and a half when Rachel is well of treatment related stuff.  Yesterday we did 4 hours of treatments, and then unconventional but really helpful things like trampolining, and making her play tag (like I said she is a kid, and just thinks we are having fun when in reality we have a purpose to the fun).  That is not counting the extra treatments that had to be washed and sterillized. It really changes a day for everyone in our family.  I am so thankful that we homeschool.  As tough as it is to get everything in our day done, when Rachel is sick, we don’t have to go by anyone else’s schedule and can still do some type of school compared to the days and days off that CF can sometimes require in a public school. Catching up on extra reading, playing quite games, and puzzles while we do the extra treatments makes the drudgery of so many treatments a little better. CF affects everyone in our house, not just her.  Not only the immediate extra treatments, and concern about her well being, but with CF it seems the hospital is always just right around ever corner and cold.  Depending on how her body responds to the oral, or inhaled antibiotics. So it is hard to plan anything when she is sick.

This morning the boys were so sad that they were not able to go to p.e. with our group.  I was sad for them too.  It is hard: not just on Rachel when she coughs so much her stomach hurts and she can’t eat anything, or a mom that is tired from staying up with her and listening to her breathe, but it is hard on the healthy ones too.  This disease affects us all.  Nathan was especially sad this morning, but it was a great opportunity to remind him of God’s sovereign plan and ability to meet all of our needs.  I shared with him how God has something very special in store for him and that even during hard circumstances that God is molding his character through Rachel’s illness. We talk about this often with him, as the oldest, he understands the severity of her disease (more than I would like him to) as well as feels the pain of loss from what he wished life were like.  I have to trust that God is going to use that in amazing ways in all of my kiddos lives. As an awesome answer to a mama’s heart cries this morning, God still worked it out that the boys were able to have a fun day.  God is truly good!!

As for today, Rachel is still really coughing hard, we may need to call the doctors again this afternoon and ask them for a steroid.  Last year she was not able to get through a cold with out it.  Upside, it really opened up her airways, downside…well, let’s just say there are too many to list!!!!!  At one point today, she looked at me with a pitiful look and said, “Mama, I am so tired of coughing.  My stomach hurts!”  But in her sweet, and oh so spicy Rachel way, moments later she was up and running around the house coughing as she went.

Continuing to pray that her body, plus the antibiotocs, covered by the hand of God almighty make this “just another cold”.  He is more than able!!!

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