The results are in...

Well, we received the final results on all of  Lexi's tests done at her CF appt in Chapel Hill.  You know, to look at Lexi and talk to Lexi...she seems to be a perfectly healthy, normal child.  It seems as though there is nothing wrong b/c you can not see the effects that Cystic Fibrosis has on the body until it has progressed.  This often makes daily life a struggle.  You can not see the vitamins that she looses in her stool, the huge amount of salt she looses when she sweats, the thick mucus that is in her lungs, sinuses, pancreas, liver, and gallbladder.  You can not see or even hear the inflammation that perfume, chemicals, smoke, or allergens cause in her lungs until it is too late.  You can not see the bacteria and mold that grows in her lungs.  All of this is hard to comprehend.  I mean, most days she has absolutely no signs of Cystic Fibrosis.

This makes it really easy to want to get lazy.  I mean skipping one treatment (not that we have done this but a couple of times) didn't make any difference that we can see...right.  Using soap, lotion, or washing powder that actually smells clean didn't seem to matter, so why not!?  Cleaning vigorously around sinks and bath tubs to make sure there is not 1 mold spore...I mean should I stress myself?  Staying up late to clean and sterilize her nebulizers...And worse...having to make family and friends follow the millions of rules that come a long with CF.  I hate that the most...We have to miss occasions where there will be grilling or bonfires or lake swimming.  We have to remind people about air fresheners and candle burning, and perfume...this has alienated us at times from friends and family.  I mean, is all this stress even worth it?

What these changes have done is make us realize how much people love and care about Lexi.  Family, friends, and even strangers go to great length to protect Lexi.  You really find out how GREAT people are.

You know even trips to the UNC Cystic Fibrosis Center seem to be just part of normal life.  You know they never speak about prognosis or the progression of her CF.  Just seems kinda social sometimes, like visiting friends that listen to Lexi's lungs and get her vitals.  I guess to them, the symptoms that I am beginning to see more and more and just normal.  Not to me man!!!!  I want to be aggressive, I want to stop the symptoms all together, not just slow their progression.  I want NO COUGH, not a baseline cough!!

And then....they fax me all the actual results...that they say are normal for her age....so I think that means good...right!?

*  Her labs were mostly normal, except her vitamin k needs to be watched b/c her blood clotting time was a little off...and all of this is good...we are eating right, taking our vitamins as directed, staying hydrated, her kidneys are not being effected by her meds, her blood count is not increased trying to fight off any infection, and her labs show she is not having any major allergic reactions to anything.
*  Her lung culture again shows ORSA (resistant staph..much like MRSA) and Aspergillus fumigatus (a fungus much like mold).  I want no bacteria!!!!
*  Her Chest X-Ray says: Her lungs are hyperinflated and perihylar opacities extend into all lobes.  Peribronchial thickening has increased from previous exams.  Upper lobe bronchiectasis is noted.  Brasfield score is 20.  I want really normal!!!

Needless to say they did not go over the results of the CXR with me at her last appt, so I have lots of questions for the nurse next week.  This seems like a ton of bricks....reality of this horrible disease.  I am used to seeing reports from our office, where I work read, "heart and lungs appear normal"...I am not liking this news at all.   In fact....I HATE, HATE, HATE THIS....Like I said before, this may be normal for CF kids her age, but I want real normal!!!!!!!!!

And what the crap is a Brasfield score...no one has mentioned this before.  I look it up, it seems to be a way that CF doctors can calculate the progression the disease has on the lungs.  The highest score is 25 and lowest is 3....not happy bout this either.  Lexi is 7, she should be at the height of health...right?!  I want her number to be 30!!!!!!!

Among all the devil has thrown at us...there is a light that continues to shine through....God's light that gives me so much hope and comfort on what he can and is gonna do for Lexi...Her liver labs continue to show absolutely no sign of liver disease.  For those of you who do not know....when Lexi was 6 mos old she had severe liver disease.  Her liver function was more that 30 times what it should have been.  She needed a liver transplant but the doctors said she was too small.  They told us that she would never see her first birthday.....Then God touched her!!!!! Praise the Lord, God touched her and healed her liver completely!!!!  This is what keeps me focused and strong knowing that my hard work and faith in God will bring Lexi complete healing one day!!!

Thanks for listening and sorry for the rant that is sooo long.
We love you all and are so thankful for each of your daily prayers.

Lexi's CF appointment today went well.  She has had a lot of congestion and a pretty bad cough since Feb 2nd.  We were on 9 weeks of an oral antibiotic called Septra and are just finishing up about 1 more weeks worth of an inhaled antibiotic called Cayston.  Neither of these has done a lot for her this time.  I have been very concerned, and today made me very anxious.  All of her tests came back pretty good.  Her oxygen was fine, her lungs some what clear, and her pulmonary function test was good at 97%.  So where in the world is this cough coming from.  We are baffled and you know me, I am freaking out!  I will not stop until her cough is GONE!!  Whatever it takes....  I am not a side liner, nor am I passive about her treatment.  I probably worry those folks at UNC, but too bad:)  My motto is:  The harder we work now, the healthier she will be forever. 

We are gonna try again with the Septra because it normally works.  This time about 4-6 weeks and go from there. 

New news today was that Lexi will probably need sinus surgery in the next couple of years...yuck!!  Also our CF doctor, who I depend on sooooo deeply is leaving the country for 6 mos...WHAT!!!???  She is head of the Cystic Fibrosis Research Center and is going on a research sabbatical. 

Anyway...have a good day!  I have so much to say, but to tired physically and emotionally to continue:)

Prayers needed...

Lexi goes for her yearly Cystic Fibrosis check up.  Don't exactly know why I am soo nervous.  Just normal things like; pulmonary function test, upper respiratory culture, vitals, and check up by the doctor.  We will additionally do labs, chest x-ray, see the nutritionist/dietician, and social worker...so this visit will be extra long and grueling on my little angel.  She dreads it for weeks prior to the appointment.  I can't say that I blame her. 

Please keep us in your prayers over the next couple of days.