March CF Clinic

Finn had his quarterly CF clinic visit on Monday March 3rd.  I will admit to being nervous going into this visit as he had been on antibiotics three times in the three months since our December visit.  He goes on antibiotics quite frequently, as do most people who battle CF, as a precautionary measure.  Anytime he gets a cold that results in him coughing for more than 2-3 days, his doctor likes him to go on antibiotics.  The purpose behind the antibiotics isn't to clear the cold (or virus) that he is fighting but rather to discourage any bad bacteria from taking up residence in the sticky mucus that his body produces as it fights the virus.  I honestly feel that Finn has had mostly clean cultures and is not culturing any bad "super bugs" because we have been so generous with the antibiotics.  He cultured Staph for 6 months or so last year and I feel somewhat responsible for that as I allowed to him to try to clear a cold on his own last summer without antibiotics (simply because I worried about overuse and building resistance).  Anyway, I've learned my lesson.  His culture taken at this March clinic came back clean.  So, we have finally gotten ridden of the Staph!!  Yay!

At the visit in March he also attempted PFTs (Pulmonary Function Tests) for the second time.  Because the laptop was unavailable he had to actually leave our clinic room and go to the testing room.  They had him gown up for this and he loved it!  He called it a cape and hopped his way down the hall!  He tried hard and came close to actually getting a good reading for us, but not quite.  I actually think I figured out what we forgot to tell him and so I'm hoping that in June we may actually get a good reading.  Crossing my fingers!

attempting PFTs

Anyway, because of all of the antibiotic needs and his sinus-like symptoms, his doctor referred us to an ENT.  We visited with the ENT just a few days later.  That visit did not go as smoothly as I would have liked (insert screaming baby Bree, Finn who didn't want to fully cooperate, etc.) but we did get a good discussion with the doctor.  Finn had a sinus CT taken two years ago that showed all of his sinuses with complete opacification.  (in other words they were totally full)  As a result of that CT, we had his adenoids removed and began using Flonase daily.  Because of this CT and all of his recent sinus-like symptoms, the doctor thought we needed to go ahead with another sinus CT.  He thought we should try to do it as soon as we had finished a round of antibiotics so that we could see how good his sinuses could be with all of the proper treatments.  Unfortunately, we didn't get in to the CT as soon as we should have, but we did get it done.  It took us longer to schedule the CT because we were coordinating with the CF doctor to decided where and how to do it.  The ENT recommended sedation and both CF clinic and I wanted to avoid that.  We ended up driving to a brand new Children's Hospital Facility in Highlands Ranch (south side of Denver) that had a super fast machine.  It only had to circle around one time to get the picture!  And I talked to Finn about it several days ahead of time and bribed him with whatever he wanted (he chose ice cream).  He did FANTASTIC!  The day of the CT I showed him some pictures of a CT machine on the computer and of a person laying down inside of it.  When we got there he took his coat and hat off and jumped right on up to the bed.  The room had a children's projector with images on the ceiling that he loved.  His only request was that I stay in the room with him.  I was allowed to hold his hand, but he told me he didn't need that.  I was so proud of him!  I talked him through it and it was fast and painless.  And then the CT tech let him pick from a mountain of really awesome toys (picture full on Lego sets here!).  He chose an Angry Birds puzzle and a sticker and was the happiest boy in the hospital that day.  We walked in at 2:10 for a 2:30 appointment and walked out (with Finn waving to everyone that we passed) at 2:30pm.  It was a great experience.

The brand new Children's facility

Being a CT rockstar

Prizes!

Anyway, we are now awaiting CT results.  I will admit to being nervous as we did not go right when the round of antibiotics was finished and I am not sure that we remembered to do his Flonase the night before the scan.  And then just days after the scan he was very sick.  Sooooooo........I'm nervous that the scan is going to show opacification again and that the doctors will interpret that to be his constant state when it may not be.  I'm crossing my fingers for better results.