Zoe for Life: Zoe health update....

Friday, March 11, 2011

Zoe health update....

Thank you for all the good well wishes. Unfortunately, Zoe's pft's are even LOWER than before hospital. Sooooo, one more week of iv's. 79!!! I was quite shocked. And saddened. I have being doing research on bronchiectasis since she has it now....I've been discussing the fact that Staph seems to be a bacteria that directly causes it with her docs...so, how come we don't treat it if there are no symptoms at the time of culture?? Zoe cultures Staph a lot, has since 2007. I think we need to change protocol. Sad day for me...I thought it would be years before I saw pft's in the 70's in my baby girl. CF....you've got a battle on your hands now!!!

1 comment:

ChristyMarch 14, 2011 at 11:45 AM
This all sounds so similar to Mackenzie. Bronchiolitis diagnosis during her first hospital stay at age 9. Staph is ALWAYS present in her cultures. Around the time of her last hospital stay at age 12, her PFTs had been hovering in the 60s and 70s. Over the past year they've been steadily improving - back up to high 80s. I'm not sure what to attribute it to...lots of physical activity - running, dance. Change in meds were mainly addition of Hypertonic Saline and the M/W/F Zythromyacin. We'll be rooting for Zoe to get those PFTs back up!
ReplyDelete
Replies

Add comment

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

Friday, March 11, 2011

Zoe health update....

1 comment:

Blog Archive