Tonight I am writing this post...from our house! Cayden was discharged today after 18 days of being inpatient. He was so excited and all morning he couldn't stop saying how he couldn't wait to be home. No more beeping IVs, nurses in and out, trips back and forth, uncomfortable sofa sleepers or cafeteria food to eat.
We are home.
It seems his flare up was not related to any bacteria growth in his throat OR lungs which is amazing. But we still do not have any reason for his cough other than lots of speculation and theories. In the time I wrote last Dr. Schroth ordered allergy blood work (results still pending...) and a CT scan of Cayden's sinuses. The scan showed lots of mucus in his sinuses which is actually very normal for a CF patient. Right now we are finishing his prednisone cycle and have added a few other steroid type drugs to decrease inflammation in his airways and help with post nasal drip-which is why the doctors believe he is still coughing. The doctors also restarted pantoprozole (an antacid drug Cayden took as an infant but hasn't been on for the past few years) in case he is having reflux. This is another pretty common drug for CF patients who need acid suppressors due to the disease.
Until we see our regular pulmonologist we are also going home with hypertonic saline nebulized twice a day, a 14 day cycle of TOBi nebulized twice a day, Flovent (inhaled steroid) to decrease inflammation, albuterol inhaler before physical activity, and nasal mist. If he seems to still be coughing after we finish the prednisone on Monday we will talk to the clinic about a steroid nasal spray. I think if I count right that's a lot of steroids. Poor guy, but he is doing so great even with all these extra changes to his meds.
I can't say that we were "sad" to leave, but it helped a lot that our regular nurses and RTs weren't there since it was the weekend. But we couldn't leave and not let the staff know how much their care meant to us. I asked Cayden to write a note in the thank you card with a bouquet of flowers we picked from home.
Cayden is amazing to say the least. And I'm not just saying that because I am his mom. He has been blessed with the most kind and humble heart. Chris and I both had to wipe tears away as we read what he wrote:
And we couldn't say it any better. For the nurses, doctors, RTs, PTs, and you. All those who took care of us, our family during this trial. We are so grateful to have our baby home and our family put back together. In the words of sweet Cayden: "Thank you for all the things you do for us."
Happy Father's Day tomorrow! Enjoy those you love the most.
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