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!
Saturday, July 9, 2011
Aunt Alana, Aunt Courtney and Uncle Andrew were there for the first surgery. The surgeries went well. The first one took 2 hours, there was a lot of thick, infected mucus removed, along with cleaning out the ethmoid and maxillary sinus cavities. She was so infected, the swelling was pushing her septum to the side. She was in a lot of pain this time. It was very hard to see her hurting so badly. Her O2 did very well this surgery. She was discharged the next day to go home and recover for 2 weeks before the next surgery. This next surgery was supposed to be what is called a "second look". Should take 30 minutes or less to go in, make sure all packing is gone, etc... After a very anxious hour and a half, Zoe's ENT came out. In 2 weeks Zoe had grown 2 huge polyps. Needless to say, her Dr and us were very shocked. It was decided at this time that Zoe had to do sinus rinses twice a day with a special compounded steroid to help keep her sinuses cleaned out as much as possible. Poor baby, was in more pain again. She had an issue with her O2 that night in the hospital. I watched the monitor all night....it fluctuated between 88-91. In the morning, she was sitting up and feeling good enough to eat and have guests!!! Go Zoe!!! Hopefully these hospitalizations and surgeries will keep our girl healthy for a while. It was a rough couple of months for all of us. Thank you all for continuing to hold Zoe in your prayers. Eating, her friend Michaela visiting, and finally happy to be home....with her Teddy bear gift.
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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