Our check-up

Today is a better day...I was really struggling Tues and yesterday, which is why this update is a little late. 

Lexi went for her hospital follow up at UNC on Tues.  We were hoping to get her PICC line pulled, but were disappointed.  The pulmonologist could hear a lot of congestion, her pulmonary function test was down, and she is still coughing.  We decided that she needed a 4th week of IV antibiotics.  Lexi was very disappointed.  We want what is best for her, but that is not always easy.  We are hoping that the congestion the doctor could hear was the infection breaking up.

We are also having a hard time with Lexi's PICC line.  She is very sensitive to latex and any adhesives.  It is mandatory to keep a sticky, sterile dressing over where the line goes into her arm.  This minimizes the risk for infection and also helps keep the line safer in place.  Over time Lexi's skin has become angry and irritated by the dressing.  Every time we changed her dressing, a little more of her skin pulled off.  It is now so raw that she is in severe pain.  We are having to now use dry sterile dressings for a few days.  This will hopefully give her skin a chance to heal.  Having this type of dressing on is very unsafe.  It makes her more at risk for infection or for her PICC line to move.  This makes us all very uneasy, b/c a PICC is a little different than a regular IV.  It is a line that runs in the upper part of the arm, up around her shoulder area, and into the upper part of her heart.  As you can see, this can be bad if air, a blood clot, or bacteria is introduced to this line.

The worse part of all of this is the dressing changes.  Even though the adhesive dressing irritated her arm, we only had to change her dressing 1 x per week.  Now that her dressing is dry gauze, we have to change it every day.  This is TERRIBLE.  As you can imagine.  We have to removed the gauze, which sticks a little, then clean the area with a product kinda like alcohol.  Needless to say it burns like crazy.  Bless her heart!!!! It just breaks my heart thinking about it.  She screams in pain the entire time we change the dressing and for 45 min-1 hour afterward.  Then the itching begins....of course she can't scratch b/c of the dressing and it hurts to even touch.  It is terrible for us all.  We can not stand to see her in such agony.  Tues when I changed her dressing, she of course cried and screamed.  She said, "This is not fair Mommy,"  "I can't take this anymore!"  It broke by heart.  I cry as I write this.

Please keep us in your prayer.  Lexi is probably better spirit than I am.  Unfortunately, she is used to hours of breathing treatments and just goes with the flow.

Thanks for all of your concern.  You will never know how much we appreciate it.

An update...

Hi everyone, I am excited to say that Lexi is improving.  Thank you so much for all of your concern and prayers.  We go to UNC on Tues for a recheck and to decide how long before we can take her PICC out.  Her cough is still pretty bad, but they assured me that this was common and a very good thing.  It means that the antibiotic is breaking up the infection in her chest.  Our next obstacle is to see an ENT to check Lexi's sinuses.  While performing her Bronchoscopy, the doctors looked up the back of her throat and into her nose.  They observed some enlargement of her adnoids and a lot of thick secretions in her nose and sinuses.  They are concerned that this may be part of her cough problem and possibly causing some of the lingering infection in her lungs.  Really not looking forward to possible sinus surgery, but you all know me.  Whatever keeps her healthy...lets do it and do it fast.

There a lot of other things that I am dealing with and need your prayers.  This situation has been going on for years, but has progressively gotten worse.  I am having a hard time dealing with this along with other things.  Maybe it is the stress and little sleep that make me more emotional some days.  I try not to feel sorry for myself  because I know so many people have a lot more problems than us.  Some days I am happy, some days sad, some days angry, but most days I am thankful...very, very thankful:)  I know everyone has those days....

I feel like God wanted me to create this blog to glorify Him, but I also wanted to do this to keep family and friends updated, and an outlet for me to express my emotions.

With that said, do not be suprised if every now and then you see a crazy rant:)

Love you all.

Hey guys!  I am finally able to get to a regular computer and update my blog.  My heart is overwhelmed with the calls, texts, emails, posts, and visits.  I knew we were loved, but man this feels REALLY good!  Words will never be able to descibe how thankful we are for each and every one of you!  I can honestly say that your prayers and kind words have kept us going.  Keep them coming.

Love you all!

Where do I start....

Lexi has been on antibiotics since her last appt at UNC.  Her cough has only mildly improved.  She coughs less often during the day, but when she does it is deep and wet.  In reality, she has been on antibiotics almost daily since January. 

We are going into the hospital next Fri for Lexi to have a Bronchoscopy.  The pulmonologist will go down her throat and into her lungs to look around and collect sputum samples to culture.  I am believing in good results, but the devil is still on my back.  She and I both are very anxious.  As you can imagine how a 7 year old feels.  She is scared and has asked me thousands of questions.  I am not sure it makes things any easier that she has already experienced this.  She knows how scary it is.  She remembers the gown, the smells, the scary nurses, and the mask that will suffocatingly cover her face as she falls asleep.

I can think positive and keep my mind focused on God's plan.  Lexi will be healed, God is using every experience to draw us and someone else closer into his arms, and this is going to make her completely better.  Her anxiety, however, breaks my heart...  I mean, how do you comfort her.  She is sooo smart.  She asks questions as if she were 20 yrs old.  Mom, when will they start my IV, will they put my PICC line in while I am asleep, what antibiotics will I get...ect.  And bless her heart, she will be so worked up by the day of the procedure, they will have to give her some Ativan to calm her down before they are ready to take her back to surgery.  She is so strong, and tries to hide her emotions....but I know. 

Please be in prayer for us as this day approaches.  Pray for safety, pray for the doctors to have knowledge, pray for peace, and pray for this to be the day that God performs the biggest miracle for us....perfect healing!!!!  I think New Bern's news channel may be there to do a documentary on the procedure for the upcoming telethon.   What a great day it would be for our Angel to receive the blessing that she is promised....

Melissa

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.