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Appointment Day 11-29-11

So thankful today for the peace that comes from the Lord.  Each and EVERY CF appointment  is and has been a challenge to my spirit.  Although, it is hard to put into words why.  I think it is because the appointment is a direct reminder of the battle that we face.  Day to day we just “do” life, and it is not until we stop and are asked specific questions on the “in’s and out’s” of how Rachel is really doing that the gravity of CF hits you.  These appointments are a reminder that while she often looks great on the outside…there’s a host of other issues working against her that are hidden.    That being said, there is also great relief that at this point in her CF journey we still can say,”No” to a lot of the things on the list… feeding tube, oxygen, i.v antibiotics, inhaled regular antibiotics, diabetes, big bacterias, and the list goes on.  HUGE praise for where we are at.

Now, for the appointment, Dad was able to come for the labs.  LOVE having Dad with us.  I have to date gone to about 95% of Rachel’s appointments alone.  These appointments are on average 2 to 21/2 hours each time.  It is a long time to sit in a room trying to keep a little one entertained and calm.  So, having Dad rocks!  Rachel’s weight was AWESOME!!!   She gained about 3 full pounds since September.  For a CFer, that is AMAZING!  I swear the clinic was doing a happy dance for us.  (Knowing that weight is one of the few factors that directly relate to the length of life of CF patients…it is a battle that we constantly fight and take very seriously!)  Rachel did great on her pft’s.  She tried to blow as hard as she could.  It was cute, Dad was cheering pretty hard for her =) while she was trying to make him proud…either way it was a sight to be seen.  Rachel has such a compliant attitude with CF so far, and I praise the Lord for that.  I pray that she will continue to hold true to that as she grows up.

When the doctor came in, we did the normal chit chat and then he made a somewhat serious face that her numbers (PFT’s) were really much lower than they should be.  They measure two numbers and the one is very good, while the other one is consistently poor.  In CF we watch for a trend in numbers.  Trending down is avoided at all cost, because once it starts, it is very hard to regain that ground in lung function.  When we see this, often a tune-up is needed to get those numbers back up (I.V. treatments as well as to look for other things going on that we can see through cultures and X-rays).  Anyway, if this trending number moves beyond 5 points they start to worry and wonder what is going on.  Well, today Rachel’s was 9.5 points down from the last pft’s (after the inhaled antibiotic) .  Dad and I both could tell that the doctor was very disturbed by this number.  We were scrambling for answers??  We asked if she was still too young to know how to do PFT’s correctly, and he assured us that these numbers were real.  In dialoging and asking many question we asked what other things could be checked.

The doctor left and then came back to let us know he had checked her X-rays and it showed that there seems to be a strong evidence of asthma present.  So that was the next test to validate the x-ray findings.  The way to test this was to give her a mega dose of a bronchodilator (it caused an instant red faced, major nausea and head spinning, yucky stuff in high doses) and retest her PFT’s 20 minutes later to see if those numbers went up.  If they did, we would know that it was the asthma component that was affecting her lung function.  If not, we needed to look much deeper at what was going on.  Good news was that her lung function went up 12 points.  This means that her lungs have the capacity to do better than we have ever seen before.  Bad news, more asthma medication along with CF medication.  So while we are not thrilled with a definite asthma diagnosis, we are thankful that Rachel has seemed to be able to function with a lower lung function through out the day with little problems (only having open lungs for about 6 hours total a day- 3 or so after each treatment).  The added medication should only help.  She should be able to breath better and deeper throughout the entire day with this new medication.  We are so thankful for research and medications that makes it possible to maintain the openness of Rachel’s lungs through out the entire day.=)

So overall, the day was a good one!  Thankful for medication that makes my baby’s life a little easier (Although another adjustment to yucky medicine, her face was in shock and horror at the taste of the new inhaled medication tonight.=(  She will get used to it, I am sure, in the amazing way that she has graciously accepted so much of the difficulties of CF.).   Thankful for the weight gain!!!  Whoohoot!!   Thankful for the news about clinical trials (currently in recruit phase) that have the hope of changing our future with CF.  Now, to wait for the lung cultures to come back clear. =0  Wish we could see the “whole”  picture on our appointment days, but thankful that it was a good day on so many accounts.  God’s peace and comfort were present, and I am most of all thankful for that!

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2 Responses

  1. I’m so sorry for more medication! I do hope you see the fruit from it right away! Anything for more breath, right :).

    • Thank you friend! We haven’t noticed a difference in her breathing, but she has finally started to get used to the yucky medication. Tonight she said, that wasn’t too bad. Praise the Lord for resilient children who bravely fight CF day to day!

      Been praying for you a lot lately. Hope you are doing well. Will have to chat sometime soon. =)

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