• My Family

    Blessed by the Lord for the Joy of family!!

  • 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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New Enzyme Approach

We have been trying to switch enzymes slowly the last few weeks again to see if the slower rate of transition would give her body the ability to adjust without as much difficulties.  While it has been tedious, tiresome, and a bit stressful-we perservere in the power of the Mighty One.  I know that I have felt the stress though, greatly!  The first transition was an easy one, we took out one of the old and replaced it with 2 of the new.  Not too much problem.  The next transition was a little more difficult.  Two old out replaced by 4 new ones into her daily routine.  After about 2 days of that we began hearing of tummy aches here and there throughout the day.  The stools have become more-icky cf like, her bottom is starting to hurt  and to top it off she has lost weight due to the malabsorbing.

God is so very good in the midst. On Friday night, and all day Saturday she was pretty fussy.  In turn so was I.  lots of stools, and irritability from her.  (Don’t blame her, I can’t imagine what it would feel like to have an upset stomach all day, sore bottom from so much pooping and then to have me as her mom that just doesn’t take no for an answer when it comes to eating.)  Anyway, on the way to church Sunday I was just so overcome with frustration, and weariness from the constant CF Fight.  Most of the time I feel the strength of the Lord to keep up the fight, but every once in a while I just want a break!!  So tired of the fight and yet in the same breath…so very grateful that I GET to fight (it is a daily balance of struggling to lay it down before the Lord, and allow Him to carry the great burden for me).  Anyway at church we had an amazing speaker that spoke on a physical miracle from the Lord in healing.  He had gone through some very intense struggles, spiritually, emotionally and physically where he was very, very sick.  At one point he stopped and talked about his long road to recovery and said something to the effect of , “Blessed are you care givers!  It is by your selflessness that God’s glory is shown.   The hands that  show love when no one else sees.”  Paul looked at me, and the tears began rolling.  It was as if the Lord himself were speaking to my heart.  This fight is tough!!  Daily the consumption of CF surrounds me: the kitchen counter that is littered with syringes drying for the next use, sanitizer for neb’s -big and bold stare me each morning, the pile of medicines that fill an entire cupboard, not to mention the watching the clock to make sure that I have all the “gads” of medicines on time, and treatments scattered through out….when I write it I can see why I start to feel consumed by CF and yet-I serve a big God who is able to heal Rachel from all of it!!  If He chooses not too, He is refining me at the very least to lay down my life to serve Him through the trials of this disease. I see joy and purpose in His will. The speaker was eventually healed of his disease, all to the glory of God!  Amazing, and the one thing that I know from his story, as hard as it sounded from the outside…it was tenfold harder going through it.  I was blessed by his story and God’s timing!!

So on to today.  I called the dr this morning to let them know what has gone on the last few days with Rachel.  We feel a little pressure, cause if we can’t get this figured out-at some point in the near future we run out of the enzymes that work.  At least now we have a little wiggle room to attempt to figure things out.  So the dr thought we should try a new approach.  She said for most of their patients they just give a standard dose so that it is easy to remember with all the med’s daily.  For Rachel she thought that I was capable of dosing per meal since I watch carefully what goes into her mouth and know calories and fat grams better than I know state capitals =)  (I took this as a slight compliment, but with a little frustration in that we might be able to get a handle on this issue  if she is given the enzymes to cover the amount of fat grams in each meal.)  So today armed with a calculator and ingredient labels I dosed according to fat (since CFers don’t make enzymes to digest fat, protein or carb’s, but Lipase- the one for fat is the measurement that is a standard to dose with.  Fat is the most difficult one to digest so that along with the fact that too much lipase has been known to cause bowel obstruction that is the enzyme used.  Rachel was born with bowel obstruction she is in a greatly increased risk of having another one).  As I spoke with the doctor today it became very clear to me that with this new enzyme that we were nowhere close to the numbers that she needed.  For lunch today she had a hotdog (don’t judge me =) she loves them) and an avocado.  Together they were 44 grams of fat.  The dose we were giving her were 4 Pancrecarb (old ones) and 4 Creon (new ones).  With that meal she needed to take 8 Creons based on fat grams.  NO WONDER she has had so many issues.  Tonight for dinner she had 70 grams of fat!!!  That is 15 Creon plus the 4 pancrecarb.  It is no wonder that her little tummy hurts!!!  I am a bit excited that at least we have a direction to work on.  (Just so you know she doesn’t eat like that every meal, but usually a meal or two a day- when she is on one of her med’s used for an appetite stimulant-these are the building weeks to carry her through when the medicine wears off and she only wants to eat a pickle all day.)

 

So praise to the Lord most high.  I am just so excited that we may be onto something.  I will update on how the food goes tomorrow, and if it stays where it is suppose to be -tummy, not toilet.  God is good.  If these work she will need to have 24 little Creon pills to replace the 6 Pancrecarb she took, good thing she is the best pill taker that I have ever know!!  She still takes handfuls of pills WITHOUT WATER, and has since she was 18  months old!  We are just so hopeful that SOMETHING will work.   Thank you so much for praying with us and for us.  God is bigger than…..

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