CF Clinic with a Special Visitor

A had CF clinic yesterday and we decided to bring W along.  It’s a long trip to the Chicago hospital – over an hour.  But W was a trooper. J

A’s lung function was a bit down.  Down enough for me to be concerned – less than a 10% difference, but still lower than any of his recent readings.  On the bright side, I seemed more concerned about the lower numbers than A’s doctor.  Doctor B prescribed an antibiotic and A is to check in and let the doctor know how he’s feeling once he’s finished with the antibiotic.  A assured me he feels good, which is most important. But considering A just finished a round of Cayston, we were hoping his numbers would be higher.  One thing that worried me was Doctor B mentioned IV treatment if A’s lung function doesn’t improve at his next appointment.  I have flashbacks to last summer and the hospital stay.  It was such a difficult time for everyone.  I’m praying we don’t have to go through that again.  Not to mention that A’s next appointment is 3 days prior to S’s first birthday.  I’d be heartbroken (as would A) if he wasn’t home for S’s birthday.  With each clinic visit, I fear the lung function results will signal the beginning of a decline.  But I’m taking it as a positive that A doesn’t have to report back for another three months.

I also had a chance to talk to Doctor B about Orkambi and CF drugs on the horizon.  I really really like doctor B.  I never feel like my questions are stupid and he always includes me in discussions regarding A’s health.  He didn’t seem to be very impressed with Orkambi and mentioned that it was getting more difficult to convince insurance to cover it.  It is not approved for A's CF mutation, but I was curious if it might be some day.  He did say that the CF Foundation is working hard to advance it’s pipeline and find drugs that will benefit all 1500 CF mutations and not just a select few.  There is an initiative to have medications identified by 2020.  That doesn’t sound super optimistic, but I left feeling hopeful and thankful that we saw Doctor B this visit.

As for W, he was a big hit.  I’m not sure what it is about this hospital, but each time we go, he has several admirers.  Every time we were in an elevator, at the doctor’s office, in the lab, pharmacy, hallway, etc., someone would complement his hair, eyes, behavior, and even his shoes.  He was extremely popular.  At one point, A was sitting on the exam table and W ran over to him and said something like, “Daddy, I checking on you.  Are you ok, daddy?”.  It was one of the sweetest things I’ve ever seen.  We also had a nurse? social worker?... I can’t remember now… introduce herself as Katie.  She was gowned up as each person does when they enter the exam room.  W saw her and replied, “Katie is all wrapped up!!”.  So cute.  He definitely makes a mundane appointment a lot more fun.

After the appointment, we took W to a kid’s café.  It was adorable - complete with a miniature town and ride on cars.  He loved it.