Zoe for Life: Zoe cultured Pseudomonas for the first time

Wednesday, July 30, 2008

Zoe cultured Pseudomonas for the first time

The dreaded call came yesterday...Zoe has cultured PA for the first time. I got off the phone and cried. Then I got pissed...pissed at cf.

I guess what really gets you is...your floating along thinking, wow, it has been 7 months since she has been in the hospital, we are doing good! Then SLAP!! right in the face.

Yeah, sure she has been on orals several times since then, Bactrim a few times, Keflex, but I thought over all, we were doing good.

I guess another thing is, you do everything that is preventative, I mean EVERYTHING, we never miss treatments, never. But the nature of the disease still shines through and puts you back into your place. Ugghhh.

So, we picked up her Cipro (an oral antibiotic) and Tobi (an inhaled nebulized antibiotic~it takes 30 minutes to nebulize) today...will start tonight. Zoe asked me, "Is that (speaking of the Tobi~it smells and tastes bad) the treatment that I don't like??". To which I responded, "Yes, baby, it is, I'm sorry." She sais, "Ohhhhh, I don't like that medicine...."

Onward we march..........

2 comments:

Chatty FamilyJuly 30, 2008 at 5:26 PM
Hi, just found your blog through the CF forums. My sone was diagnosed just shy of his 1st birthday too. He turned 2 in March. He just had his first PA culture in Feb. We were floored. We enrolled him in the EPIC study. Not sure if you have it in your area, but thought I would mention it. Sorry about your daughter's culture. Wishing you and her well during this time of new adjustments. Kick it's tushy, Zoe!!
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Just Jenkins...August 2, 2008 at 11:00 PM
we are praying for you guys! we hope zoe gets better!
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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

Wednesday, July 30, 2008

Zoe cultured Pseudomonas for the first time

2 comments:

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