Quarterly CF Update

As soon as the wheels landed back in Appleton from March on the Hill, we turned around and had our quarterly CF check up in Green Bay. This appointment had a very different tune as this time the CF team was asking me questions from what I heard and learned at the conference.

As always, Maddox had to have his throat swabbed and this time, the only tear he had was because Paula was able to get a really good culture in the back of his throat and it made him gag.

Rocking Throat Swab Solo

After the throat swab, Laura came in and Maddox and Daddy went to do his spirometer testing while Tammy and Sherri and I were able to chat on height, weight and his meds. While he grew taller from our last appointment, he actually lost weight. If you have been following along on the blog posts, we know this is not good. Tammy and I were chatting to see if there was anything different or if something happened. I mentioned that just about all of the kids in his 4k class have been out sick and his daycare has daily postings of kiddos have the Influenza virus. Though Maddox hasn’t missed a day, he has had his days were he was fighting something. Not enough to take him down n out and never a fever but just a step slower than normal. We discussed that he does have a sinus issue yet and that it is probably contributing to recent tummy concerns. So, Tammy suggested that we have two options 1) Increase his enzymes but she is hesitant as he is already on the high end of the dosages already or 2) keep a food journal for 3-4 days so that we can see what his diet looks like. We opted for option 2. Through this approach, we can see what his normal input looks like as a 4 year and then we can put a strategy together. This could be that if he going to have a really ‘fatty’ meal that we would increase the enzymes for just that meal. So, that’s what we did – following him around all weekend and requested help from his teachers so we can get a well rounded perspective on his intake. Easier said than done. I can for sure tell Maddox must be going through a growth spurt or he knows that we are monitoring because he has been a bottomless pit and always asking for more. 🙂

Blue Bear by his side

Then walks in Maddox, Nick and Laura from the breathing test. Laura mentioned that for only having doing this test 2 times, he is really starting to get the hang of it and blew a really good number so she didn’t have any concerns. After we all chatted about some lovely insurance concerns and making sure we are good on meds, we had a break in between CF team members. Next came in Julie and she had Maddox showing her how high and far he could jump, talked about basketball and the upcoming Flag Football season.

Then Dr Pete walks in. From here, Maddox had a head to toe exam and Dr Pete is still concerned about Maddox’s sinuses as they are inflamed and probably have nasal polyops. Dr Pete had stated that we really are not going to do much with him until he turns 6 and hope that Trikafta has been approved for his age group by that time. The nasal surgeries would help temporarily but it’s truly just a bandaid as he will always have the underlying issues. We talked about the weight loss and was in agreement for the food study. Then we talked about the future and that once Maddox is on Trikafta that most of the concerns we are having now should be taken care of with the new medication. Sinus issues should be gone, he should be gaining weight and his lung function should continue to be strong (if not improve). If/when it’s approved for the 6-11 age group, we really will have to wait until he’s 6 (not 5 1/2 or 5 3/4 as the FDA is very particular for what the ages are approved for). Then Dr Pete reflected on how much he’s seen in the CF part of his medical practice. He stated that he’s been working on CF for 30 years and he mentioned that in the next 10 years, we probably won’t need to go to the CF team anymore and that the primary family doctors will be able to take over care from there. It’s bittersweet to have that thought from him, to be able to see how far the advances have come from when he first started meeting with CF parents and patients to making that comment to us with Trikafta as an option for 90% of CF patients. For Nick and I, we appreciate the CF clinic visits as we have the ability to ask questions every 3 months and have that check in to make sure Maddox is ok. It’s almost become my security blanket for him to make sure his lungs are clear, a plan for the weight issues and now to keep an eye on his lung functions. We are so hopeful that the CF Research team will continue with their research and that it will have the necessary approvals so it will be a great 6 year old birthday gift for him. Here’s to keeping him as healthy as we can until he turns 6 (or when it’s approved for his age group – which ever comes first).

Maddox explaining Transformer Rescuebots

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