Zoe for Life: CF realization

Wednesday, March 12, 2008

CF realization

I knew the day would come, just really didn't think it was going to come so early. Yesterday, Zoe walked up to me, looked up at me with those big blue eyes and said "Mommy, do you have cf?" I stopped what I was doing. I looked down at her thinking, what do I say????? I said, "No, baby, mommy doesn't have cf." To which she replies, "Why not?" Wow. She isn't even 4 yet. This is harder than I thought it was going to be....the moment they notice they are different, the moment they realize they are the only one in the family with cf. I said, "I guess God wanted you to be extra special." She was good with that answer. She went about her normal 3 yr old play. I cried.

1 comment:

BeverlyMarch 12, 2008 at 9:40 PM
I cried too when I read this. I was changing my granddaughter's diaper yesterday, and one of her percussors was lying near the stack of diapers.

She grabbed it and started tapping her hest. I smiled and at the same time was very sad that it has to be a part of her life. At least she knows no different right now.

I dread the day when these questions arise.
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Zoe's Current Medications and Treatments

~ Zen-Pep ~ 3-4 capsules with all meals and snacks
digestive enzymes to break down and absorb fats
~AquAdeks ~ 1 daily
special fat soluble vitamins
~Prevacid ~ 15 mg. once daily
proton pump inhibitor that helps with the efficacy of her enzymes

~Azithromycin ~ 250 mg. Mon., Wed., Fri., used for chronic lung infection, Bronchiectasis
~DHA ~ 500 mg. once daily
omega-3 fatty acid to decrease inflammation

~D3~

~Calcium ~ due to CF patients being prone to Osteopenia and Osteoporosis at a very early age

~Mometasone ~ a steroid used in nasal rinses to reduce inflammation and polyps
~Albuterol ~ 3 ml. by nebulizer 2-3 times daily
inhaled bronchodilator to open the airways
~Hypertonic Saline 7% ~ 4 ml. by nebulizer BID
an extra salty sterile solution used to help clear mucus from the lungs & in Zoe's case we are using a face mask so the medicine will go through her nasal passages hopefully keeping her sinuses clearer
~Pulmozyme ~ 2.5 ml. by nebulizer once daily
thins the thick secretions so they are easier to cough out of the lungs

~Flovent ~ A steroid to help reduce inflammation
~Incourage Vest ~ 30 minutes in morning after all 3 nebulized meds
a chest physiotherapy vest that fits on her like a ski jacket, it inflates with air, then vibrates at different frequencies, to help loosen the mucus so she can cough it out
~Manual CPT or Percussor 5000 ~ in evening after nebulized meds
manual CPT is clapping on her lung areas front and back with your hand or a soft percussor cup, the Percussor 5000 is an electric handheld percussor, these are both done for 15 minutes

~Monthly Port a Catheter flushes ~ administered by her home health nurse. 5 ml of 100 unit Heparin

~Food ~ Zoe requires around 2500-3000 calories a day to maintain her weight at a healthy level
~Love ~ Zoe requires tons of kisses and hugs everyday!!!! XOXOXOXO

Wednesday, March 12, 2008

CF realization

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