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Update -CF Appointment

Well, I just wanted to write a quick blurp about our appointment yesterday.  It was a good appointment I am very happy to say (as far as what we can see).  Rachel’s weight was good.  Her lung function test was the same that it was last time albeit still on the pretty low side for a kiddo of 6.  However, the doctor did give me some encouragement on that.  Rachel has “blown” a 81% as her high and as low as 52 on her PFT (pulmonary function test) in the course of the last 2 years.  The 52% of course being when she was pretty sick and the 81% while we have had a good run of health which only follows good logic.  The doctor again explained not to get to hung up on those numbers.  While they would certainly like to see them higher (there are many kiddos her age that have PFT’s of 105% or more) she is at least being consistent.  This may just be the best lung capacity that she will have.  As a mother that is a little hard to hear, and yet the practical side of me says, “Well, what do we do to keep this number as high as we can for as long as we can?”.   When I asked the doctor he said to work on her lung efficiency.  Keeping her active.  He spelled it out very well in an example.  He mentioned that unless I trained, my lungs would not be able to endure a marathon most likely (okay, so a 5 k would be a stretch these days with my lack of exercise=0) even though I probably have somewhat normal lung function.  So the real key is to keep her working at the highest level that her body will allow her to function at for as long as we can to strengthen and work with the lungs she has.  That made great sense to me.  Rather than fret about those numbers, I came away yesterday  feeling like we had some kind of control, even if it feels like it is a miniscule  at times.  There is still some control over this crazy disease.

Now we wait for the lung function test to come back clear.  It is so strange how stressful that time of waiting is each time (after 32 tests…and still the same racing of my heart when I see the hospital come up on our caller-id).  You would certainly think I would be used to it by now, but it still leaves me on high alert till I hear an all clear back from the lab.  Just knowing that one call from the lab could drastically change the course of our everyday life is one that I wish were not a reality.  Knowing the BIG bacterias are life altering, but even one of the most common bacterias (that has shown up once in Rachel’s cultures, but has not been present in over 4 years PRAISE THE LORD) in CF dramatically changes the way a day runs in that it adds at least an additional hour to an already insanely time consuming vest and nebulizer treatment time.  So, we wait and pray for God’s grace and health on our baby girl!

While in clinic yesterday there was a teenager that sounded like he/she was coughing their lungs out in the next room.  It was heart breaking to hear the non-stop CF cough.  The ones that sound like they are going to get sick on their own secretion because it is so thick and they are coughing so hard to try and get it out.  When you hear one of “these” types of coughs, it makes you kinda hold your breath a bit to make sure that the person WILL be able to take their next breath!)  At one point we got a peak of the doctors coming out of the room in the yellow “bio-hazard” gear.  (Usually it means that they are carrying a pretty dangerous bug/bacteria in their lungs.)  Kinda flipped me a out a little thinking that Rachel was breathing the same air in the hallway and then unfortunately where we do the lung function test.  That made me cringe followed by lots of prayerful covering on her for the remainder of our time.   As one of the 5 people that came in and out of our room was exiting we saw at one point the mom of the kiddo in the hallway.  The fear and concern that was written on her face was…an emotion that I could clearly relate to and even worse that creeping fear that this IS what this disease does to young lives.  It breaks them down and eventually destroys their lives!  It is a reality that is too close.  CF is around us all the time.  There is not a day that goes by that we are not directly affected by CF.  Even when times are peaceful on the CF front (which they have been for a little while-PRAISE THE LORD) the reality that a fight is around the corner is wearisome.  I wish that I could close my eyes super tight (and CF would just go away! and if not…) all that would remain of CF is just a few pills and treatments.  Because, while I rather despise those parts of CF too, it is the easier part of this disease in an odd and strange way.  These are concrete things that I can control.  The sickness and the declining lungs are something that sometimes no matter what you do…the disease marches downward.  As fall and winter are approaching…the knowledge that it so often brings sickness with it is being brought before the Lord!

So while it was a good appointment for Rachel, it was a bit sobering in thinking about the kiddo next to us.  I wish for a moment that we could forget that we are in a fight for Rachel’s life.  We are in a fight for her health.  A fight for her every breath!  This kiddo reminded me that we need to keep praying for a cure-and soon!

*As a side note, I tried to get a video of Rachel doing her PFT’s however she is starting to get a bit more protective and asked that I not take pictures. Interesting!  My baby is starting to grow up-yeah, but is also beginning to understand a bit of this crazy, difficult disease of CF=(.   Thankful and blessed by the Lord in His sovereign mercies!


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