Zoe for Life....
Our journey with Cystic Fibrosis....
Tara..............28....and Cecil....almost in the "Circle of Trust"...LOL
Dalton...25 and Donna...25...proud parents of our first grand baby...Ella Faith!
Wednesday, August 22, 2012
Well just a quick update.... After three weeks on IV abx our Zoe looks, sounds, and feels well! She actually blew a 106 fir her PFT's.... Nice! Thank you for all the prayers, positive thoughts, and support as we help Zoe in her fight against this horrible, genetic, life-shortening disease we call cystic fibrosis.... Take care of you and yours!! ~Scott
Born April 7, 2004. Diagnosed with Cystic Fibrosis on the eve of her first birthday....
This blog will be a story of Zoe's journey with Cystic Fibrosis. We will try to keep up to date information on Zoe, our family and Cystic Fibrosis news. Thank you for your interest in our lives.....may God bless you....
Cystic Fibrosis is a life shortening genetic disease. CF causes the body to produce an abnormally thick, sticky mucus, which clogs the airways and leads to life-threatening lung infections. The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to break down and digest food.
There is NO cure!
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
~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
Zoe's Genetic Mutations
Delta F508 (class 2) 1717-1G to A (class 1) classes of CF genes range from class 1-5, 1 being the most severe disease causing to 5 causing little to no symptoms
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