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.