We are FREE...well a little.

I want everyone to know how great our God is.  I know He is the healer of  Lexi.  I know that everyone has been praying these past 4 weeks for us, but these last few days we have felt God's power.  You know we were getting a little more and more concerned this last week b/c Lexi's cough had not improved at all.  We were not sure how this week would end and what direction we were going to take next.  I even placed a call to UNC on Tues to let them know that Lexi was no better.  That is how concerned I was...  I was ready to maybe try a course of steroids, which I HATE.

Yesterday rolled around as it has the past few weeks.  I left work around 2pm to come home and start our afternoon treatment.  I started Lexi's IV and sat her between my legs to do her pat pats.  I usually do her back first.  After about 5 minutes, I always make Lexi cough....AND HER COUGH WAS CLEAR.  Again, I tell her to cough.  She coughs several more times...again HER COUGH IS NOT CONGESTED AT ALL!!!!  Wow, up until this moment when she huffs or coughs she sounds very, very congested.  Once she starts this cough, she usually has to cough several times to get clearance again.

Again at her evening breathing treatment, we go through the same ritual.  I make her huff and cough again, and once more her cough was clear.  I was excited, but hesitant to get my hopes up. 

Today, as most of you know was the test.  We had to go back to UNC for her check-up and decide what to do next.  On the way Reed and I several times asked Lexi to cough for us.  Each time the same.  A little congestion, which sounded like some sinus drainage...but nothing major at all.  PRAISE THE LORD!!!

We had an appt for her pulmonary function test first.  She blew 106%....THE BEST EVER!!!! And this is without having done any albuterol to open her air ways and without having done any airway clearance.  (Cause we didn't have time before we left this am!)  Dr. Davis came in and her lungs sounded clear.  Oh how excited we all were.  Finally...the PICC can come out, her little raw arm can heal, we can all get some much needed sleep, and return to our normal/abnormal life. 

Thank you all for all of your prayers, concern, and support.  We NEEDED every call, text, email, or question of concern.  It blesses our heart that we are so loved.

Love and Hugs,
Melissa

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.