December CF Appointment

Now that the holidays are over, it’s time to catch up on the rest of December. In one of the latest posts, I mentioned that we had his December CF appointment lined up and that we did the blood draw and chest xray at his pediatric doctor office. Then came the day that we went to the CF Clinic. We get to the hospital and Maddox was not having it and was just being super crabby with us. He was mad that Nick dropped us off at the reception door and while he parked the car. He was just screaming at the top of his lungs, “I want my daddy”. Make a person feel awesome, right. All the sweet old ladies were all smiling at me as they knew what I was going through. Dad comes back and we try to get him to calm down as we are trying to get registered.

We finally get everything taken care of and we are off to the CF floor. We find our designated room and we walk in to a huge gift bag with Maddox’s name on it! Here the team collected donated Christmas gifts for him! How cool is that?!

Billie walks in and we start the normal questions of how is life, plans for the holidays, and we told Maddox that he couldn’t open his gift bag until he did his throat swab. Billie asked, he said let’s do it and he had it done in record time! She finishes up her questions and sends in the team. Sumeda, geneticist, hops in first and we chat about the upcoming CF events, any updates in family history and a few other things. We chat with Tammy, dietitian, and mentions that Maddox had a good weight gain and that we are still following the growth charts, slowly but surely. Then we had Julie, Physical therapist, stop in and she loves to hear all the sports that Maddox is in to stay limber and active. Sherry, pharmacist, stops in and we review all the medications and prescriptions that Maddox has and to make sure we are all set for the next 3 months. We chatted a little bit that he was low in Vitamin D so we are trying something different to increase that. We live in Wisconsin, who isn’t low on Vitamin D?

Then Laura, respiratory therapist, walks in and she announced that we are trying something new for this visit, we are starting his spirometer testing. Before we went back into the room, there were a few points in conversation that happened. We discussed that this test is where most of the CF anxiety starts to kick in and that everyone thinks they are going to fail their test. She mentioned to us that having the right mindset when looking at these will help get through these appointments.

This test is an evaluation of lung function with a machine (spirometer) and is one of the simplest and most common pulmonary function test. With the numbers, we will eventually have his base line and we will monitor his lung function has he grows older to monitor. The test determines how well the lungs receive, hold and utilize air and to monitor the effectiveness of treatments. People then have anxiety on how their numbers are doing and that’s all they think about in between treatments.

Laura then asks Maddox if he wants to go bowling and he perks right up and announces to Laura, yea and I’m gonna get a strike! We head to a separate room that has a breathing piece that is hooked up to a laptop. She pulls up a chair for Maddox and runs through how to get a strike. He needs to put his lips on the piece, breathe in and breathe out 8 times. The machine then measures the lung function and kicks out the numbers.

Maddox got super competitive and did awesome as he was able to breath long enough into the machine to get strikes and blow out the candles. Laura commented that for his first time, he did awesome. It was tough as he really didn’t breathe in and out of the machine fully each time but she said that it will become 2nd nature at our next couple of visits. We were handed numbers but she didn’t mention that those were his baseline numbers as they were not complete and fully accurate test but things are looking good.

Then Dr Pete walks in and we are in the homestretch of our appointment. He does a quick exam and he is still concerned about his sinuses. It seems that every time we see him, Maddox has a cold or sinus infection. We are still on the watch for Symdeko and the clinic is keeping a close eye on Trikafta for Maddox as the trials for 6-11 year old are next in line. Dr Pete mentioned that he didn’t see any concerns other than the usually; low on Vit D, needs to keep eating to pack on the weight, meds for his sinuses and watching for the next step of meds for Maddox. Then we were out the door until our next appointment in March!

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