• 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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Our Appointment

The “box”.  This is our first look at the respiratory box, it is another tool that the CF docs use to measure the air flow of lungs.  The doctor wanted Rachel to try this today, but…it was a bit intimidating.  She did however sit in it, (after mom did, complete with funny faces from the inside=).  This is an airtight room so it is able to measure the total airflow in a different way than Rachel’s pft tests do.  We are going to attempt to try this the next visit.

There is great stress each and every appointment.  Something about even walking in the hospital raises the level a few notches.  It was no different today.  Rachel is growing up, we don’t have the screams and shouts at every little thing the doctors ask her to do any more.  The sputum “gag” culture (this is where they stick a swab down her throat to gather mucus to test for new bacteria growth in the lungs) used to make Rachel go through the roof.  I would have to hold her down while the respiratory therapist came in to do the dirty work.  At some point CF patients will spit in a cup.  Today, Rachel gave that a try.  It is the first time she even tried.  Progress.

Rachel also did well just letting the doctors prod and poke at her.  Dr Columbo has been concerned in the past that her lung function numbers have been very low.  Today for the first time, he thought that maybe those numbers are not accurate (that is our hope and prayer).  One of her numbers were actually in the normal range.   That is a first ever.  Now we wait for the sputum culture results to come back.  Every appointment this is one of the things I dread the most.  It takes 5+ days to get the results back.  There is a level of concern each time because depending on what, if anything new, is growing, the treatment plan can change significantly.   Currently Rachel only cultures staph, it is a bug (bacteria) that causes a lot of trouble when she gets sick, however, when she is well, it is less virulent than many others.  There are some bugs that constantly and silently destroy lung tissue, we pray against those in Rachel’s little body.

The only downside of the appointment today (other than the time to go there, which was not even too bad at just about 2 hours) was that there was another little girl Rachel’s age with CF there.  She was very sick, and while it was tough to watch this little girl struggling so hard-after a prayer for the girl, it was a great reminder that we are so very thankful for the health that we have right now.  We know that CF takes turns and twist that no one can predict.  Being grateful in the moment- for all that God has given.

TRULY BLESSED BY A GOOD AND AWESOME GOD!!

 

 

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