• My 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)

  • Recent Posts

  • Monthly Archives

One Month On Trikafta

Well yesterday was officially 4 weeks on the new medication.  All I can say is:

GOD IS GOOD!!!

While Rachel still struggles with side effects (I will write about in a minute).  SHE HAS DONE AMAZING!!

The girls have been playing basketball for about a month now (she started the same week she started the new med).  On Tuesday night we were doing some conditioning at the end of the practice and the entire team was struggling with exhaustion.  Rachel was tired, but had a smile on her face.  When we got in the car, she made a comment that BLESSED my socks off.  She said, “Mom I was watching everyone breathing hard and all I could think is that I feel like I have more breath than I ever have had!!! I wasn’t even really breathing hard!”  HOW COOL IS THAT!!!!  That is a miracle and incredible blessing from the Lord.  She feels like she can breathe deep! NORMAL~

Add to this, she is on the end of a really nasty cold.  On day 18 of the medication she caught a pretty nasty cold.  One in which her little sister was coughing and gagging through the night.  One that her healthy body needed to have breathing treatments to combat.  So naturally we were a little alarmed to see how this cold would go with Rachel.  We increased treatment, and waited the normal couple of days.  But finally we had to call the doctor as she sounded pretty bad.  We typically start an antibiotic on about day two or three and then Rachel still gets her breath taken away, coughing and gasping through horrible coughs.  We were waiting to see how this sickness would go. WELL…we started the antibiotic and within three to four days she was clearing the crud like a normal sick person.  We could hear the crud moving around in her chest.  Usually her airways get so tight that she not only needs an antibiotic or two, but often times with a cold this bad, she would need a burst of steroids as well.   BUT, by GOD’S GRACE…she did amazing.  Rachel has about four more days of her antibiotic, and you could hardly tell that she even had a cold…that is the gift of this new medication.

Okay, now I shared the great things that are going on.  We do have a few things that we could still use some prayer on.  One is that Rachel is still struggling with migraines.  They aren’t as bad, or as long as they were at the beginning, but she still gets them nearly every day at some point. Also, she keeps experiencing low blood sugar episodes. At least daily she has a time where she feels like she is going to faint or passout. After she gets some type of sugar she usually feels a bit better.  We have tried to check her blood sugars when she feels that way, but so far they have been in the normal range (so we either missed the drop, or…not sure what is going one). Rachel is also struggling pretty decently with insomnia and leg cramps at night.  This has happened every night since she started this medication except one. She gets awakened to legs cramping.  Not fun for sure.  But, THANKFULLY we home school and she has been able to sleep in a little bit in the morning.  We are hoping that these symptoms will start to go away soon.  Most nights she is up a couple of hours at minimum. It is tough, and makes for a challenging start to the morning. BUT… we are NOT COMPLAINING!!!!  There are some people who have had an easy transition to this new medication, others more of a challenge.  Rachel is somewhere in the middle.  Her body is pretty sensitive and always has been, so we just continue to watch and pray for the least amount of effects possible.

The good so far out weighs the bad that we are constantly thanking the Lord for His goodness to Rachel.  We go for a cf appointment in two weeks.  I am so excited to see REAL numbers and proof that life is drastically different for my girl.  Our hearts are overwhelmed and hopeful in a way that we have honestly never experienced in her 14 1/2 years of beautiful life. Thank you for the prayers and for the encouragement.

FAITH~BREATH~HOPE

God is faithful. We look forward to sharing more amazing news in the weeks ahead.

 

%d bloggers like this: