Yesterday Kelsie and Mackenzie had their first double CF visit. After being there for over 4 hours and watching Kelsie go through a VERY traumatic experience getting her throat swabbed for a routine sputum culture, we all left feeling exhausted and emotionally drained. It was the saddest thing to watch Kelsie fight her hardest to resist this test and, as her mom, I felt so disappointed, surprised, frustrated and sad watching all of this unfold. As I sat there watching her kick and fight and hold her hands over her mouth with teeth clinched together, so determined not to let this happen to her, all I could think was she is just fighting for control. She has no choice in all the things she has to do every day and as she grows older, I think she is realizing that more and more. She is already tired of complying with the regimen this disease forces upon her. And secretly, she is trying to figure out a way to grab a hold of some control. I think what happened yesterday was less about the fear and more about an anger toward all that she has to do against her will because of the disease. It was a heart breaking realization for me and one of those poignant moments I think I will remember forever.
Honestly, it’s hard to remember much else about the visit. Overall everything was fine. Kelsie’s PFTs were awesome (>100%) but they always have been thankfully. She still hasn’t had any lung infections so far which I think is incredible. Her weight was down a bit but I think that was a result of a recent infection that affected her appetite. She had several colds back to back, had been on antibiotics a couple of times and just hadn’t been eating well. Because of this ongoing nasal congestion she was having a chronic morning cough which led her doctor to believe she was dealing with ongoing sinus issues. She has had this cough for almost 12 weeks despite being on 2 antibiotics but it still wasn’t anything that particularly worried me. The doctor discussed a couple of options including referring her to an ENT to evaluate for enlarged adenoids and starting daily azithromycin which is commonly used in older children and adults with CF to help with inflammation. I wasn’t too fond of either of these options and asked to use Flonase (nasal steroid spray typically used to help nasal allergies) consistently for a week to see if that would help with the chronic nasal congestion and post-nasal drip induced cough. She agreed and thankfully, the cough did go away after a week or two so we didn’t add any additional treatments.
Kelsie still doesn’t mind going to these appointments and complies with everything like a champ – EXCEPT the throat culture which I can’t even think about anymore. She loves all of the staff and is always very chatty and charming. Everyone is always excited to see her so I know that makes her time there more enjoyable.
So just as we were finishing up Kelsie’s visit, we remembered we still hadn’t even gotten to Mackenzie yet! We were already so exhausted and we had only gotten through one of the visits. Thankfully, there wasn’t as much to talk about with Mac. We discussed the typical baby stuff…poop, spit up, enzymes, feedings, and more poop. Lots of descriptive words describing poop were used, which is something my pediatric nursing mind is very comfortable with. Ha! We ended up increasing the dose of enzymes and reflux medicine but thats about all the news on her. Her growth looked fantastic – weight 13lbs 5oz (56th%) so she has consistently been moving up in percentiles which is awesome! Nothing too surprising there.