Staying home with both girls all summer has kept me busy and left me little time to sit at the computer so I have taken a bit of a hiatus from writing, but still wanted to take a minute to document our most recent clinic visit.
Like I have noted before, the girls go every 3 months for their routine CF clinic appointment. Besides some malabsorption concerns with Mackenzie and Kelsie’s recent sinus infection, there haven’t been any serious health issues lately so most of the visit was routine follow up. Kelsie received her routine PFTs (pulmonary function test) and both girls received their throat culture to test for any dangerous organisms in their lungs. Kelsie was also due for her annual labs and chest X-ray this time.
My husband stayed home with Miss. Mackenzie while she took her morning nap and Kelsie and I got there early with the intentions of getting labs and/or x-ray out of the way first. But it was such a beautiful morning and a rare moment with just the two of us so I decided some special one on one time with her and a Starbucks treat would be a better way to start the day. 🙂 She adorned me with flowers as we sat outside enjoying our treats.
At the beginning of each visit, after weighing in and getting vital signs, we walk over to do her PFTs. She still doesn’t have the technique down so the results still weren’t considered a true representation of her lung function. But with more practice she will get the hang of it. (I still don’t understand all of it exactly and honestly don’t know that I could do it correctly either!)
She was VERY excited to get a unicorn on her star breather certificate! 🙂
Once back to the clinic room, we wait for our visit from the physician, nurse, dietician, and whoever else decides to stop by and say hello. 🙂 And we wait for the the throat test which she still dreads. A few visits back, I decided I had to figure out a way to make her throat cultures less traumatic. She had become extremely fearful of this test and had to be held down time and time again. So I came up with the idea of a “magic lollipop” and it has worked like a charm! She gets the lollipop PRIOR to the test and not only does she think it has special medicine to make the “throat test” not hurt, but it also just eases her anxiety as she happily enjoys a giant piece of candy that she doesn’t get any other time. This time we did the culture first thing and got it out of the way. She took her 10 quick licks of that lollipop, opened her mouth, and it was over. I believe we are almost to the point where she won’t need this little trick any longer, but she still worries about this test, and still asks if she will get the magic lollipop. So hopefully the Dollar Tree, ahem, PHARMACY I mean, 😉 will still come through for us as long as we need it.
The other thing she asks for is magic cream, aka EMLA, before blood draws. And this actually is a medicated cream that helps numb the skin prior to blood draws/IV sticks. I told her ahead of time that she would be getting “a shot”, and she immediately asked if she could get the magic cream. So the nurse put it on while we were in the clinic room so it could do its magic and by the time we got to the lab, she wasn’t worried a bit. She sat in the chair and gave them her arm. They asked me to hold her in my lap and I told them I didn’t think it was necessary. (Thankfully she didn’t prove me wrong). They put the needle in and she watched the whole time without so much of a flinch or a grimace and watched them draw 6 vials of blood with such poise! She did the exact same thing last year as a 4 year old but I was still impressed this time around. Even as a peds nurse, I have rarely seen a kid sit quite so still and stoic during a blood draw. The lab techs were also impressed and told her she could have THREE sheets of stickers because she did so well! 😉 Thank you “magic cream”.
Besides the more invasive pieces of the visit, the rest was pretty straightforward. Growth is always a big topic of conversation with CFers and thankfully, both girls are growing very well. Kelsie’s weight and height are around the 65th percentile and tracking along the curve wonderfully. We didn’t change anything with her treatment plan.
Mackenzie is still hanging out right at the 50th percentile mark and tracking perfectly along the curve as well for both weight and height, but we still had to make make some changes on her medications. Over the past month, her stools have shown consistent signs of malabsorption and have not improved despite being on a max dose of enzymes. With no room to increase her dose, her doctor recommended we switch to a different brand of enzymes. Apparently, this small change in brand name (from Creon to Zenpep) can make a difference in some people with CF, even though the drug is essentially the same. I honestly was reluctant to make this switch because we have been using Creon for 5 years with Kelsie and it is what I am used to. Her new medication will now require 5 capsules per feeding instead of 4 so that will be an additional pill to open up each time. (Which doesn’t sound like much, but it feels that way when you do it at every snack or meal, everywhere you go, and with two children under tow.) The pharmacy just got the new prescription in today and I just gave her her first dose tonight. My first impression is that I don’t like it. :/ The capsules are much tighter and harder to open, the beads inside are larger, and it is just a more tedious process than it already was. But we will give it a try and see if it makes an obvious difference.
I also heard from her doctor later that day that Kelsie’s labs and X-ray looked great with no concerns whatsoever! There had been no changes in her lungs and no abnormal lab values. So we were very happy to hear that.
My Kelsie is getting bigger and acts more grown up but she still carries a stuffed animal with her wherever we go (which I have no objection to). By the way, this is her dolphin Kayna (whom she named herself). 😉 I have to say that I just walk away from these visits feeling even more in love and proud of this child of mine, for her bravery, her resilience, and her compliance with whatever is asked of her. I know one day, our clinic visits will likely not be this joyful. Even though it is a lot of work to keep it this way, this is a good and happy state of life at the moment and I am savoring it for as long as it lasts. Still it is the unfortunate reality, that unless a cure is miraculously found, there will eventually be a time when her lung function starts to decline and her growth isn’t as easy to maintain. That goes for both of my dear children. But I won’t let myself linger on those thoughts for too long, and instead, I am counting each one of these blessings and sending up praise and gratitude for this good place we are in today!