We got home Sunday night, one night longer stay than we were expecting, but not too bad. The surgery went well. It did take the whole two hours. Her ENT doc said that her sinus passages were tiny, swollen, and filled with a "thick, like toothpaste, yellow mucus". Yeah. Anyways, she cleared her all out, took samples for cultures.
In recovery, we came to her. She was crying. Tears were rolling down her cheeks. I picked her up out of the bed they had her in. She snuggled up, then fell restlessly back to sleep in my arms. For the next 2 hours plus, her sats dropped down into the 70's. I was scared. Scott was scared. We have never seen her sats drop before. They ended up doing blow by oxygen for over an hour and a half. Finally, she was able to keep her O2 over 92, so they sent us to her room. Because of that, they kept the O2 sensor on her the entire hospital stay (she was not happy about the E.T. light being on all the time)!!
Then we found out that her pulm. doc wanted to make sure she "pooped" before discharge. Of course, she didn't. So they kept her another night. Ugggh. A little Miralax later...and we get our discharge.
She has had to take some regular Tylenol since we have been home. The first 2 days was Tylenol with Codeine. She was in a bit of pain, sinus area and throat. Now she has a lot of draining going on. She is sniffing constantly. I guess that is to be expected after clearing out the sinus cavities. We will wait to see what her cultures grow to see what antibiotics they want to put her on. Other than that, she has her second "clean-out" sinus surgery on the 8th.
I want to wish you all, my family, a very warm, happy, Thanksgiving!!
Tomorrow is the day. We have to be there at 8:00 a.m., surgery is at 10:00. It is supposed to take 2 hours. Then she will be admitted for a couple of days. I have to admit, I'm a little nervous about this admission. Mainly because of 2 hours of anesthesia, and the 'pain' after factor. She hasn't ever had anything besides picc placements, bronchs, endoscopies, etc... never anything associated with pain afterwards. I have no idea how she even handles 'pain' yet. Does she have a low or high pain tolerance level??? Ugghh. I do know she panics with picc bandage removals, cries alligator tears because it "hurts".
Sitting there for 2 hours during surgery....wondering...thinking....waiting...I think it could be a form of torture.
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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