Annual Clinic Visit

Finn has quarterly visits with his specialist from Children's Hospital, but every year for his birthday he has what they call an annual appointment.  This is a more thorough appointment than the quarterly ones in that it includes lab work, x-rays, and eventually even more labs and tests.  Because of these additional tests this appointment always takes place at the hospital in Denver instead of the clinic location in Colorado Springs.  So, bright and early Monday morning Finn and I headed up to Denver for our day at the hospital.

Now, I intended to take my camera along on our trip, however in the rush to get out of the house I didn't realize that I forgot it until we were away from the house.  So, we'll have to do a photo documentary next time (which hopefully won't be for another year!).  I, therefore, apologize for the lack of pictures in this post.

The appointment was fairly standard at first.  We were checked-in with weight and height.  Finn measured 33 inches tall and weighed 10.9 kg or 24 pounds.  (At least I saw 10.9 on the scale, but the nurse wrote 10.7 on our paperwork.  That translates into only 23 pounds 9 ounces.  I guess we'll have to wait until he gets weighed again at the pediatrician next week.)  Then we were placed in our room where we were first visited by the respiratory therapist (RT).  Finn was having a great time running around and playing with the bead toy in the room.  He did not want to stop to get his oxygen level measured, or to let the RT listen to his lungs.  We eventually got his oxygen saturation of 97 and then she gave up on listening to his lungs.  He did not want to be bothered.  

Next we were visited by the nurse. With the RT and the nurse, I told them about this cold that Finn just couldn't seem to shake.  He started into a cold 4 weeks ago, but there still seemed to be a lingering cough and the very occasional clear runny nose.  Both of them took note of this, but he was running around and being Finn.  He looked and acted fine.  Obviously, he couldn't be that sick.  After talking with the nurse, we got Finn his "stickers" with numbing creme on it for the nooks of his little elbows.  This had to be the funniest part of our appointment.  He did not like having these on and felt like he couldn't bend his elbows.  He kept walking around with his arms extended and whining with a pouty face.  He would ask me to take them off.  I eventually got him to sit on my lap and read books.  

Our third visitor was our social worker.  We had a good long talk which really bothered Finn.  He started getting angry with the whole situation.  He was trying to play on his own while I talked, but he "couldn't" bend his elbows, his creme was leaking out of his stickers and so he thought he was dirty, and he was just done.  He seriously started giving her the stink eye.  We were laughing so hard.  He was simply way too cute.  (And being the sucker that I am, I took his stickers off.)

Finally, the doctor came in.  After once again explaining this lingering cold, we put Finn on my lap so she could take a look at him.  By this point he was so tired that he just sat there and let her get a good long listen. She was listening for so long that I started to worry.  And then she asked me if I noticed how hard he was breathing.  Well, yes, but he was just running around right?  And then she showed me that he had some minor chest retractions (breathing in so hard you can see his rib cage).  Um.....uh oh.  Finally, she said that it sounded as if his right lung did not have as much air as his left.  This left her concerned that he might have one of two different possible problems--either pneumonia (which really wasn't likely as he had no other symptoms) or a small portion of his lung had collapsed.  Apparently, kids with CF are more susceptible to this.  Yikes!  So, at that point she said if either of these were the case, Finn would need to stay at the hospital.    Double yikes!  Instead of continuing with our appointment as scheduled, so sent us straight down to radiology to get a look at his lungs.

Finn was so excited to get out of that doctor's room.  He ran through the halls of the hospital, pushed the elevator buttons and was as happy as could be.  He even was a gem while waiting our turn at radiology.  He found some other boys (who were much older by the way) to play with while they watched the perpetual motion machine and they had a blast.  He was not at all thrilled with being held down for his x-rays when his turn came, but it wasn't bad and then we were on our way again.

While we were at radiology, the doctor called down and asked us to stop at the lab before we came back up.  So, we made our way over to the outpatient lab and waited.  And waited.  Turns out they forgot about us.  Once we had that taken care of it wasn't bad.  After all of that drama with his "stickers" earlier, it turned out that the numbing cream was still working and so the blood draw wasn't bad at all.  Finally, we were back to our pulmonology appointment.

When we returned to our room the nurse met us and said that they would try to get us through as quickly as possible so we could go home.  Yes, we were getting to go home.  The x-rays didn't turn up either of the problems that were the concern.  They did, however, turn up an area of inflammation in his middle airways.  The doctor also pulled up his x-rays from last year and the same area was clearly visible, just slightly smaller.  The "diagnosis" she gave was airway disease--which is pretty much a non-diagnosis.  We're not sure what has caused this inflammation or what it means.  (If you google "airway disease", you'll find reactive airway disease which is apparently thrown around the same circles as asthma.  Could this be the early stages of an asthma diagnosis??)  Frankly, they didn't even seem sure what to do about it.  So, they extended his antibiotic prescription for 2 more weeks and added a steroid for 5 days.  They said that if his cough didn't clear up in two weeks, we may have to head back.

We finished up our appointment by meeting with the nutritionist, getting our paperwork (including a letter for airport security explaining all of Finn's medications and equipment), and stopping to get me a flu shot on the way out.  Finn was so happy to be free that he practically ran through the halls, only to crash within minutes of hitting his car seat.  Poor thing had missed his nap on Sunday and here it was 2pm on Monday.  He needed his sleep after all he had been through.

Now that it's Friday, we're nearly done with the steroids, which have gratefully cleared up the cough.  When watching him tonight, though, he still seems to be breathing hard and maybe still has chest retractions.  But I don't know for sure.....or at least I don't trust myself.  Thankfully, we'll be seeing his pediatrician next Wednesday and then we won't need to see the pulmonologist for another 3 months.  That's always my goal....to not have to go back or call them for 3 months.  We take it just 3 months at a time.

Just for fun, here's a look at his home care paperwork.  We get these after every appointment.  Just look at all of his medications.  Yes, it's a little crazy!