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!
Monday, July 1, 2013
The CFF Great Strides walk was a success! There were many supporters for our little Zoe. Bonefish Grill brought their Zoe for Life team...it's always so wonderful to see their smiling faces...we love them all!!
My brother, Andrew, his wife, Courtney and their 3 children made a surprise appearance all the way from Tn.! Had a few tears shedding with that!
Zoe started getting sicker again after the last post in May...the Omnicef and Prednisone helped temporarily. Then they tried oral Bactrim...she just got worse. By the weekend of June 9th, she was unable to participate in swimming or her martial arts. Her cough was bad, she was tired.
Tuesday, June 11th, her Dr wanted to see her. When they checked her O2, it was only 93. Her O2 is almost always 99/100. Number 1 reason she was so tired. Then it was time for her pfts (pulmonary function test). Her best pft in the past year was 106%, it was 59%, that is a huge decrease in lung function. Then her Dr listened to her lungs: Crackles and full of mucus. Time for an xray and direct admit to Wolfson Children's Hospital. She was admitted on IV Cefapime and 3 breathing treatment/chest physiotherapy sessions a day.
On Day 5 of the IV Cefapime she broke out in hives. They discontinued that IV med, started IV Zosyn. She broke out in hives again the next night. Her Dr. switched her to a complete different family of drugs. She started IV Tobramycin and IV Cipro, with a 5 day course of Prednisone. Her cough wasn't getting better yet.
Then came the night that was very scary for us...her O2 dropped to 91 and stayed that way. There had to be a reason for this sudden decrease in O2. Her Dr. ordered another chest X-ray that day. When he came in our room at 5:30 that day to discuss her X-ray...I knew it wasn't 'good' news. She had a condition called Atelectasis (partial collapse of lung).
We discussed what needed to be done. She would be doing 30 minutes 3 times a day of her vest (chest physiotherapy machine) and 10 cycles every hour of a spirometer. Hopefully that would 'open' her lung back up.
Thank God it worked! Her O2 went back up to 94/95! We were so happy and grateful...there were a lot of people praying for our sweet Zoe.
It was a long 10 days in the hospital with many ups and downs! She is a fighter though! She was released to go home on: IV Tobramycin, IV Cipro, an Epipen, Prednisone, 3 times a day breathing treatments and CPT, and a home O2 monitor.
She is presently still doing IVs. She still has some coughing going on. We are praying for this to completely go away and allow her to have a carefree summer...
Cystic Fibrosis is a fight. A daily fight. Zoe has never missed a single treatment since her diagnosis at the age of 1 yr. It's not an option in her life...it is just the way it is. This hospital stay showed us how quickly CF can raise its ugly head. We will battle on.
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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