Saturday, August 18, 2012

Dear Aven -
     There are so many things that I want to sit down and post about you, but I find that when you are happy and doing great, I would rather spend the time with you and your sisters instead of on the computer.  Just the other day, I realized what makes you the happiest at three months of age.  Your favorite thing has to be taking your diaper off!  Yes you grin when your family is around and are happy when you see toys and a bottle, but you smile with your eyes and are truly happy when the pampers cometh off!  So, it seems that when we hit a rough patch is when I tend to be a little more motivated to sit down and post.  Like I had mentioned before, this has been very therapeutic for me. 
      I had mentioned in the last post that you had your throat swabbed so that we could determine whether or not there might be bacteria growing.  Your team is very proactive and even though they were so pleased with your weight gain and the fact that you were not exhibiting any symptoms at the time, I did receive a phone call on Tuesday of this week stating that your culture had grown staphylococcus aureus.  A big fancy word for a very common bacteria.  Of course the mother side of me teared up a little, but the scientist in me along with your father's knowledge on staph infections, quickly put things into perspective.  S.aureus is a very common bacteria in which about 20% of the population are long term carriers. It likes to live  on the skin and in the mucous membranes of nasal cavities. This is the bacteria that is responsible for common skin infections like pimples and impetigo, but if not caught and treated, someone with a compromised immune system could develop more severe symptoms leading to pneumonia and meningitis.
      I found myself asking the one question that I have asked so many times thus far...."What do we do now?"  We are treating it aggressively with an antibiotic for the next 14 days 3xs /day  - 3 mL per dosage ( 9ml a day for the next 14 days).  If for some reason a cough develops, then we head to KC.
I have had some great struggles with our pharmacy and was dreading going to pick up the anit-biotic.  You see, according to the pharmacist, you are their only CF patient.  According to their supplier they are not wanting to provide the full script of enzymes at once because of the expense. Instead of getting all the enzymes for one month and being able to run the Live 2 Thrive card ( which can only be used every 30 days) they have told me when I need the enzymes filled, then I need to go in every two days and pick up a bottle at a time until the script is filled. I have gotten a lot of advice as to how to handle the situation and will be making several phone calls over the next few days.
      As far as your anti-biotic goes,  my first thought of course, was when comparing the medicine and dosage with antibiotics your sisters have taken, WOW there is just no comparison.  I remember your sisters taking dosages of  1 ml, twice a day for 7 - 10 days.  My next thought was wondering if we were exposing you to antibiotics too early.  I know we have to treat the bacteria, but I was a little worried that we were starting the path of building up drug resistance bacteria.  MRSA is common among CF patients from what I have read.
        I just found myself smiling when typing. Not because of the words that were just put down, but because of a thought in my head.  I just imagined you as a young lady reading these posts and thinking to yourself, that your mother was so cute trying to explain what was happening.  You see, I know that as you get older, you will have more of an understanding of your disease and you will be the one explaining and teaching all of us so very much.
                                                                      Love Today, Tomorrow, and Always,
                                                                                 Your Mother, Autumn

Above:  A great picture I took of you with your oldest sister Arya.  You just light up every time she is near.
Below: Spent some time today trying to figure out the best way to organize and store your meds.  At 3 months of age this is what you are prescribed.....will only increase as you get older.

1 comment:

  1. So glad you caught it early! You're a fighter little, Aven. Love all the pictures your Mommy posts! She's one special lady!