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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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Day 1 New Enzyme

We have now been on our new enzymes for 24 hours.  And…I am still unclear if they are working well or not, for several reasons.  First off Rachel woke two times last night with stomach cramping and bm’s.  Since your digestive system slows greatly at night time, this is significant.  At 1am she was complaining of her stomach and bottom hurting and their was oil in her stools. (You know you are familiar with Cystic Fibrosis when you can consider yourself a “poopologist” lol I thought it funny last night to be peering in the stool to evaluate the situation =) vs. flushing and going back to bed.  Sorry if it is too much information.).  Anyway, she did not sleep well last night and woke this morning with her stomach hurting.  She was not in serious pain, but definitely uncomfortable. This morning I did not give her a normal high fat breakfast (usually she eats about a 4oo+ calorie breakfast with 80% fat, and this morning she had cereal with 150 calories and 1% fat.) She only complained of her stomach hurting a couple of times.  However, with the breakfast she had…it was not a good indicator of what real life needs to be in terms of food.  Still not sure if I should take it easy on the foods I give her lowering the caloric and fat intake, or make it realistic to her actual needs.  Either way, it is a tough call, and either way she may loose weight.

This morning I was reminded of one of my favorite verses about God’s promise to give wisdom when we ask!  I love that, because I can be confident of my actions-not based ON my self, but rather on the goodness, grace and wisdom of the Lord of the Universe.  That brought comfort to my tired heart early this morning.

Rachel just finished having her normal nightly 450 calorie snack.  Today she has taken over 60 enzymes raising her daily total to somewhere around 95 med’s today.  CRAZY!!!!  Lord be gracious.  It is funny that I was (and am so anti-drugs).  Rachel has shifted the paradigm greatly, but you do what you have to do wether you like it or not sometimes.  For now we are thankful for the CF coctail, while we continue to pray and wait for that “one” combination that really turns this disease around and can make it similar to having diabetes, or HIV for that matter. With proper medicine and care, people with these disease can lead pretty normal, long lives.  That is our prayer for Cystic Fibrosis and Rachel in particular.  God is able.

Well, we are hoping and praying for a better night tonight.   Time will tell, but for today…keep the prayers coming.  God is good.  I will try to update again tomorrow.


One Response

  1. Praying for you and Rachel. I hope she is having a better night. Hugs to both of you!

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