It’s that time again, another doctor appointment. Just when we thought we were good/caught up with everything, Billie called and stated that we were due for our quarterly CF check up. In the beginning of the conversation, she stated that we really didn’t need the visit since we were just in the office, but I told her I would rather keep the appointment scheduled just in case something came up before our vacation. Good thing we kept it.
So, let’s recap how Maddox is doing since his surgery. The week after surgery was his recovery and he did OK considering everything he had done to him. During the nasal cavity clean out of the surgery, Dr Hunt mentioned that he saw a lot of infection in his little sinuses and the start of Nasal polyps. So he did his best to clear out the infection as best as he could see. He told us a right after surgery that he was sending the infection to the CF labs to see if there was anything growing in his sinuses. A week after the surgery, Dr Hunt’s office called and stated that the strains that he had were one of the ‘normal’ sinus infection strains and the other was extremely rare but normal Augmentin would clear it out. So, we were back on antibiotics for another 10 days. We could tell when he was truly feeling better as he ate almost an entire burger at a restaurant once the infection was on it’s way out.
So, we had a great week or two where he was just eating like crazy, probably because everything tasted better and it didn’t hurt to swallow. We had our follow up appointment at Dr Hunts office to make sure the ear vents healed ok, the tonsils had properly scabbed over and there were no other concerns. The one thing that Dr Hunt had mentioned right after his surgery in the post op meeting was that we might have to have another surgery and be referred down to an ENT in Milwaukee. Thankfully, when we had our follow up a few weeks that Dr Hunt did more research and that the surgery wasn’t needed at this point. We were given a good bill of health and we were out the door to plan our vacation.
Then, all the kids at school got sick. For being a daycare of having kids going to all different schools in the area, having the influenza first hit in March throughout all winter wasn’t to bad. Unless your Maddox. Seriously there are some times I feel that this kid just can’t catch a break. The email came out from the director and I had Maddox scheduled to see Dr Henry (his ped) to have the influenza test the same day as he was started to have a cough and not feeling like himself a few days earlier. Thankfully, the test came back negative, but he was still feeling like crud. More phone calls to Billie to see what we could to help him until our CF appointment later that week. He struggled until Maddox and I go to the CF appointment in GB. We get there and Maddox started off ok; he had some energy and spunk but by the end of the appointment we were both struggling.
Tammy stated that since our last CF appointment in January he has only lost a pound, which is good and bad. Good since he hasn’t really been eating much for the last month and bad that we couldn’t get him to gain more in the good times. Either way, I told her not to yell at us and that once we get him feeling better again that he will take off! :)Dr Pete came in and took a look at his ears, nose and mouth and just shook his at us. Dr Pete basically stated that we shouldn’t be in the office and that we are supposed to be healthy again. So, we are back on antibiotics; stronger and longer with the hope to kick this sinus infection that he just can’t get rid of. If this doesn’t work then we are on the stronger and longer stuff.
Dr Pete and I actually had about a 20 minute conversation about CF, Maddox, vacation and everything in between. Dr Pete stated that if he instantly clears up while we on vacation and stuffs right back up when we get back that he has allergies and should have him tested (seasonal, household, food, pets, etc). I told him that will probably happen because my allergies are so bad. Which, will sitting in the chair I had a light bulb moment that the genetic mutation that I passed onto Maddox might be symptomatic of sinus issues. I look on the issues I have, my dad has issues and a bunch of my cousins have issues as well (might be onto something for future help).
So the next part of the conversation was a lot so bear with me as I try to explain it all. Dr Pete stated that the medication that has been fixing the genetic issues with CF is in the testing phases for those that only have one of the Df508 mutations(which is people like Maddox). He stated that the testing is in the stages for kids 6 and older and once it passes those stages that the testing will come to younger kids for Maddox. There is a potential that we could be eligible for the testing teams. I asked for a time frame thinking 5-10 years and he thought 6-18 months we might be having these conversations! Meaning – in the next year we might be eligible! (Might – fingers crossed).
Then he also stated that the medications that are in the testing phases have drastically helped kiddos that have the Sinus issues like Maddox has and that if we can get him on the medications, it would help calm all the sinus cavity issues and help contain some of the polyps which can cause scarring. When I asked why Dr Hunt had initially mentioned a sinus surgery for his polyps, Dr Pete stated that was what they did in the past, but it wasn’t really fixing the root cause. The surgeries would clean out the sinuses each time to the point that it was starting to take bone fragments but the underlying issues kept coming back and that’s how the new medications have been coming in and to help alleviate the number of unneeded surgeries. Will Maddox need to have another sinus surgery? Yes, but it won’t be for another couple of years unless something drastic changes. He basically stated to call the CF team as soon as we were back from vacation as he is curious of how Maddox feels with the allergy discussion.
After Dr Pete left then the rest of the team came in. Maddox was starting to crash out and was laying on the bed in the room so his Physical Therapist was playing some games with him to test some of his muscle strengths to make sure he was still on track after being laid up for so long (not that it really stopped him). Then Laura our RT walks in with a bunch of stuff that we would need for vacation. I’ll save all that fun stuff for another blog post. Sheri our Pharmacist walked in and the 3 of us were talking about Maddox and his reaction to one of the nebs he normally takes and the reactions with his sinus infection. He would start the ‘salt water’ treatment and just go into coughing fits so we worked through a plan to help him be able to get through a full treatment. Then we were given the ok to head home! For those keeping track at home, yes we had to do the throat swab, yes he did it and barely cried this time. Another CF Quarterly check up is in the books.