Today is discharge day!! They've already de-accessed her port and re-accessed it with a fresh Huber needle. She did cry a little when they put the new needle in...but we think she is still sore from the placement surgery. The plan is....2 more weeks of IV Timentin and IV Cipro, CT scan of sinuses, 4 days of Prednisone at the end of the IVs, then sinus surgery again. Poor baby....it will have been a very long, hard month on her when it's all done. This is a picture of her portcath de-accessed. The red spot in the middle is where the Huber needle was. All the nurses said it looks wonderful! The surgeon was very conscientious about where he placed it so it wouldn't show with tank tops and swim suits! She doesn't really care either way...but it was still nice that he thought of that. Thank you all again for everything!! You all are the BEST!!! — at Wolfson Children's Hospital.
Zoe will be NPO today, her Dr has her on iv fluids to keep her hydrated. She will have surgery this afternoon to have a portcatherter placed. We are all hoping and praying that this will give Zoe some "pain-free" CF years. She is so very anxious and scared of the medical personnel from being on this forward train of pain from iv's, piccs, blood draws...etc.....Her anxiety is at an all time high. Please keep her in your prayers that this will be a successful surgery, that she will adjust to having a "permanent marker" of CF in her body. It's hard for Scott and I to think of another thing added to her CF life. I think you always know these things are a possibility when you're dealing with CF, sometimes you're just not expecting it. Not at 7.... We have gotten a lot of positive input for the portcatherter....how it will make her admissions much easier on her. This is our hope and prayers.
Hospital admission Day 1 Zoe was admitted to Wolfson Children's Hospital today due to increased wet cough, drop in pfts, a pneumonia bacteria and nasal polyps. It was a very rough day for her. They tried to use a medicine called Versed (often called happy juice) to keep her calm during the PICC placement. It didn't work this time. She was crying, coughing and delirious. After 2 failed attempts at threading the PICC in her left arm, a peripheral was placed. She was very shook up. Her cast was removed on her right arm last night so they can utilize it for a PICC. The PICC team will have her fully sedated today for this attempt. Please pray that all goes smoothly. Her peripheral lasted for only one round of iv antibiotics before it failed. The iv site was extremely painful, she was in tears. It was removed at midnight last night. During the removal she got extremely pale and almost fainted. Then she promptly threw up. So now we are an entire day behind with the IV antibiotics, blood work and cultures. She is NPO today until the procedure. Hopefully it won't be too long. Thank you for your continued prayers and thoughts for our little Zoe. Grandma and grandpa visiting
It truly was a very nice year.....we all learned a lot about love, patience and endurance. God is awesome! Zoe was in the hospital only 3 times....that's a blessing to our family! She is presently doing ok....has just finished over 15 weeks of oral antibiotics to fight the bacteria that she is growing in her cultures....our other wonderful children are doing fantastic! Austin will graduate a half a year early due to his good grades....yay Austin!!! The biggest news about Austin is that he had a corneal transplant in October!! He eventually will have to have both eyes done....but so far the first eye is showing incredible improvement!!! Hopefully by the time he is 19 he can get his drivers license! He was born with cornea dystrophy.... his latest vision tests before transplant were 20/100.....pretty rough. Zoe broke her arm!! UUUGGGHHHH!!!! First child out of 8 to need a cast!!!! Just a few weeks ago at clinic, her nutritionist told me it was time to put her on extra calcium because of the affects of Cf..... so I bought extra calcium...then 2 days later, playing on the floor (carpet) with daddy, she broke her arm....arrrrgghhh!!! Poor baby just can't catch a break.....and she just finished 3 weeks of oral antibiotics because of the 2 nasty bacteria she is growing in her cultures. Sydney finally got her life long dream of her own puppy!!! It truly was God sent!!! They love each other sooooooo much!!!!She is solid black and soooo adorable!!! Her name is Pippy!!! Praying you all have a blessed 2012...... Take care of YOU and YOURS...... Jada
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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