Hello.
Isaac is dealing with a lot of pain right now. His sinus issues of a couple of years ago have reappeared with a vengeance. I managed to bring forward an ENT appointment that he has later this month to this week, as his symptoms are worsening by the day; sinus pain makes his head hurt, and the potential (probable) infections in his sinuses make his lungs worse, and a combination of all of this results in a very vomity Isaac. It’s like a vicious triangle of mucous and pain and inflammation and retching. Maybe that is more of a square than a triangle? Anyway, I hope it makes some sense. It basically sucks.
His last sinus surgery included removing polyps (very common in CF) and shaving off some bone (are your toes curling right now?) to widen his airways. We were warned then that this may not be the last time, and today we we found out that not only will he need this surgery again imminently, he’ll likely need it yearly, until he is 18 and he can have a surgery which is a bit more major that might resolve the issue for a longer time (or forever? I’m not sure). As he was last time, Isaac is enthusiastic about this painful surgery, simply because his day to day pain is so rotten.
As well as this, his IV access (via his portacath) is troubling us too. Our community nurses (akin to Mary Poppins) came last week to do his normal monthly port flush at home, but the flush immediately entered his tissue around the port, rather than his blood stream as it should. It began to sting, Isaac alerted them pretty quickly, and the area looked obviously red. No harm done, but it raised concerns that his port was not working at all, and since we’ve had recent issues with a fibrin-sheath (causing stiffness in the line), this was not a good sign. Thankfully our CF nurse worked her magic, seeing him outside clinic time, re-accessing his port and managing to flush the line successfully. Possibly the community nurse may not have hit the right spot the first time (imagine feeling his chest, finding a a circular disk under the skin, and trying anchor that moving disk to stab a needle into the centre of that small area blindly? Not easy) but the stiffness of the line is still apparent and an ongoing concern.
The hope would be for a port to last 5-10 years, and Isaac has had this one just two. If it fails, he will need a new one, which not only means more surgery, but also one less possible place on his body that they can site a port - which are limited, and could mean problems with long term venous access later on.
That said, it’s a worry for another day! Thankfully his lungs are behaving right now.
Have a great day x
