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    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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Rejoice In The Lord Always!

God is good all the time!  We received the news this morning that Rachel’s culture came back clear of psuedomonas!!  I swear I did a enormous happy dance and felt like the biggest burden had been lifted off my shoulders!!!  I do need to let you all know that I started writing this post a couple of days ago (in my mind).  This was the title that I needed regardless of the outcome of Rachel’s culture.   As much as we wanted to hear good news-this WAS STILL going to be the title, and the Lord was working on my heart to make this my attitude as well.  He is so very good.  Saturday morning, I finally had the “Rejoice in the Lord always” mindset.  Whether that was at the hospital or at home, God is good, and He is always faithful!

I got the call from the “nurse” this morning as I was walking out the door.  (As I have said before if it is the nurse, I know that things are good, if it is the Dr.  I know they are not so good.)  She called to let me know that the culture was final.  However, there was a cautionary statement in that when PA (pseudomonas) shows up 1 of 3 things could happen with a clear culture.  The first that it is really gone.  The second, that it is in essence “hibernating” still there lurking in other parts of the lung, but not active in the culture sample that was obtained.  Or third, that while it may still be there, the numbers are so low that they don’t register.  So the caution is that it may be back on her next culture.  (I think the nurse mentioned that she needs to be clear of it for  a year to have it be considered gone.)  TODAY…I AM PRAISING THE LORD FOR HIS CARE AND PROVISIONS FOR OUR FAMILY AND MY BABY!!!  We are not heading to the hospital this week and I am beyond overjoyed!

Some of you have asked why P.A. is so dangerous.  Here is a quick definition of what it is and how it works:

About 60% of people with cystic fibrosis have a chronic respiratory infection caused by a bacteria called Pseudomonas aeruginosa that settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas aeruginosa is hard to get rid of. Respiratory failure caused by the infection is often the ultimate cause of death in many people with CF.  Here is a illustration that gives a clearer picture of how it transforms and really and truly turns into a monster!

Pseudomonas bacteria- The first picture is where the dr.'s try to catch PA. Once it reaches phase 3/4 it goes crazy! And, by phase 5 it is sending new feeders out voraciously trying to acquire new territory in the lungs and destroying every part it can. There are currently only a couple of antibiotics that work against it. The CF person's PA is very likely to become resistant at some point to these antibiotics because of high use (every other month). The problem for a CF person is not only becoming resistant to the drugs, but the antibiotics are so harsh that it also ends up destroying the liver, kidneys, and/or the heart. Hence, the reason we are so very thankful to be able to delay fighting this monster till another day!!

Surrendering to the Lord and choosing to be joyful no matter the circumstances or the outcome is something that definitely doesn’t come easy for me.  However, when I fully laid it all down at the Lord’s feet…I felt the gratitude and the peace knowing that He would do what was best!  If it was the hospital…then rejoice for there was good to be had from that.  If it was home, He knew THAT was where we needed to be.  The “spiritual journey” that comes from having a child with a chronic illness, is a definite blessing.  It is a hard one, and one that I would really prefer to skip, but a growing one none the less!

Thank you all for the many prayers and the encouragement!  We are humbled by God’s provisions and mercy to us.  We praise Him for all of you.   You have been His hands, feet and mouth (to share truth) to our family!

Rejoice in the Lord ALWAYS!! 

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