Wednesday, June 20, 2012

Cystic Fibrosis is a Progressive Disease

So I'm stating the obvious in the title of this post, but when one has an active, healthy child with no respiratory symptoms, it's easy to forget about CF.  Sure, he has to take enzymes, antibiotics, supplements, pills to make his liver happy...  But he doesn't cough, lungs sound healthy... 

Last week we took our semi-annual trip to the big City for a Lung Scan at the hospital and a follow-up appointment with the CF doctor.  Then plans for museums, shopping, eating out...  A mini-vacation so to speak.

Lung scan took about 30 minutes.  Max inhaled/nebbed a radioactive isotope and then pictures were taken of his lungs.  Primarily a disease of the small airways, this test gets a better view of what may be going on before symptoms occur.  Headed to the clinic and Max got really quiet, kinda teary... Similar to an incident a few weeks ago when a "well meaning" relative spoke to him ad nauseum about his CF.  Not sure if it was memories of his 3 week stay exactly 3 years ago due to an obstruction and subsequent surgery or just the realization that he's different.  Won't talk about it.

Anyway, got to the clinic, got him distracted enough to cheer him up.  Making jokes about the monkeys in the tree during the Pulmonary Function Test (PFT) seemed to work.  Then the verdict...  Films from the lung scan showing issues in the lower lobes with the larger airways.  Confusing because CF is primarily a disease of the small airways.  We do three, 30-minute vest treatments each day along with nebs to open the airways, thin mucus and  antibiotics.  Add to that  -- the fact that he's on three different oral antibiotics and one nebulized and what does his culture grow out.  Big old Steno. Maltophilia that's resistant to pretty much everything.  What more can we do?

While the doctor said "it's not evil" -- he's symptoms free!!! for gosh sakes ---continue on as we've been doing, it's a punch in the gut.  A reminder that this disease sucks.  That our child is sick.  And we so want to make it better and we can't.  And we can't discuss our fears, worries, concerns, anger.... while he's around because he doesn't need to worry. He just needs to stay a kid and have fun and have a friggen normal life.  I want to rage, I want to cry, I want to scream about the unfairness of it all.  But what would that accomplish other than upsetting others in our family.  Besides, it's pretty damn selfish to whine about one little lung scan when others have it so much worse -- hospitalizations, IV Antibiotics, lung transplant waiting lists...

So I've had my pity party.  Filing away this for future reference and focus on making sure our son is having a fabulous summer with no worries!  Oh, and after our appointments we hit an army surplus store, Legoland, Sonic and the Science Museum!

Wednesday, June 13, 2012


Spittlefish turned 9 a couple weeks ago.  Can't believe how quickly time passes.  Sometimes I still can't believe I'm a parent.  Mentioned to Spittlefish on a walk a few weeks ago that I'm still not so sure I've got this motherhood thing figured out and admitted to him that I'm pretty much just "winging" it.  He told me I can just look it up on the computer.  Glad someone has confidence in my abilities.  'Cuz seriously, I really don't have a clue as to what I'm doing.

Tomorrow we head to the City for a lung scan and then a CF clinic appointment.  Got his bloodwork back from his pediatrician appointment last week -- looks like his vitamin levels, glucose, liver function, etc. is all normal.  Culture reports weren't finalized yet.  Despite the massive amounts of antibiotics he's on, always seems to be growing something.

Three years ago we spent 3 weeks in the City at the Children's Hospital because Spittlefish had surgery due to an obstruction.  Looked back at some photos on facebook of him.  What a baby face at age 6!  Wow, he was so little.  Amazed at what a tough cookie he is.

9 years old!

After our appointments tomorrow, we're headed to Legoland at the Mall and to the Science Museum.  Just a short jaunt and then we'll be heading to the lake for the weekend to visit the grandparents.