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CF is TOUGH Some Days!

The last 24 hours have been ROUGH on my girl!!   =(    Most of the day(s) this week Rachel has been happily running about  with an occasional coughing spell.  However, Monday and Tuesday morning were awful!  The kind of days that made me HOLD my breath listening to her cough.  Then it seemed like she hit a little better place for most of Tuesday through Thursday afternoon.  Thursday night was rugged again.  About an hour+ of coughing hard, and  treatments did not help.  I could tell when I put her to bed last night that she was plum worn out from all the coughing.  She had that look in her eyes that said she was worn and despite her best efforts…getting beat down hard by cf.  There were tears in her eyes as I prayed over her and she quickly fell asleep.

This is what Rachel looked like most of the morning and early afternoon.

This is what Rachel looked like most of the morning and early afternoon, curled up on a chair of crashed out in the middle of the living room floor. =(

She slept well and this morning woke fairly cheerful.  She was up about 10 minutes and the coughing started again.  Hard, yucky coughs that took her breath away!  It was tough to listen to and truly knocked her on her tail.  The tears came again quickly.  She had a fever too.  Treatment did not help but only induced more coughing to the point that she was almost throwing up several times trying to move the thick sticky mucus out. =(  I got a call from the cf team first thing this am and told them that I was really close to having her admitted especially if we weren’t able to get her some help today.  They heard her coughing in the background and knew she wasn’t in a good spot.  She was begging me to have the doctors give her something to help her chests stop hurting.  Poor baby.  BROKE my HEART this morning.  I was, somehow able to hold it together in spite of her tears.  She was taking swallow breaths because she would cough every time she tried to take a big deep breath.  When I asked the drs about that they said that was to be expected due to all of her coughing and how that wears a body out, but to watch for strider, wheezing and a dusky color.  UGGG!!  That freaked me out a bit to say the least.  If there weren’t so many issues and germs to consider in the hospital (and that the doctors were pretty confident that giving these extra measures they were adding would help.  They thought that we should at least give it a chance to work.) I might have packed her right up this morning and taken her in. =( Such a balance to figure out when to head for help and when riding the storm out is the right thing.

Rachel spent about four to five hours this morning (into mid-afternoon), just whimpering, sleeping and crying.  She DID NOT feel well!  A sweet dear friend came and sat with her while I ran out to get her several medications.  Thank my gracious GOD!  We were able to get Tobi (after 5 days and from an unusual source which I will save for another day) the delivery of the medication was much, MUCH easier on her than the previous two times, which was an answer to prayer!   Thankfully, she hardly batted an eye.  =) We also used an additional bronchodilator to help relax airways.  IT SEEMED TO HELP!!  PRAISE GOD!

Rachel finally got off the couch at about 4 or 5 this evening.  Bless her heart!  CF has the ability to kick a person hard!  Many times we try to downplay the intensity of its ability to steal health…but today, this week, it was/is a reminder of the magnitude and gravity of the struggle before us.  Lord be gracious~

We ended the afternoon with a late call from dr.’s with an admission plan if things do not get better through the evening into the weekend.  They also added another high dose prednisone, oral abx, along with the others meds I picked up this morning (the bronchodilator and the inhaled tobi abx.).  So, praying between the four additional medications added today…extra treatments that we have already been doing… that my girl is prayerfully and hopefully in a getting to a better spot than she has been all week!

I have spent LOTS of time in PRAYER and asked friends to do the same today for clear direction and wisdom.  Surprisingly, I actually had/have peace about taking her to the hospital as I know that God will work out the details!  But for today…it seems Rachel has taking a tiny turn for improvement with meds on board.  God is good and He is able to do more than we could ask or imagine!!  EVEN IN…CF TOUGH!


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