Dan went in for a procedure I do not know the name of, but sounded something like cavity wall insulation to me. He had thrombosis earlier this year, which was treated, and then came back, and so they squirted a kind of foam into the now rubbished vein to stop it occurring again. Our total reliance and ongoing adoration of the NHS knows no limits..... right now he is also waiting on a hernia op and knee surgery!
At the same time Isaac went in for the lineogram to check his portacath, which as suspected revealed he has a *fibrin sheath. The test involved his port being injected with dye while a CT type scanner zoomed in close above his chest him. I stood there in my heavy lead apron, as I always do, making sure that he was OK during the tests. Only now, my murmurs of encouragement are met with a ‘shush Mum’. My not so little boy needs me less and less.
It was fascinating to see exactly how far down into his chest the port line goes (his port is sited close to his collar bone, but the line reaches near the bottom of his rib cage), to follow the dye moving down the line as they picture it, and to see where it goes wrong. Our consultant still needs to review the images, but initial thoughts are that the port can be used; the sheath means the line won’t bleed back, but the IV drugs are entering his bloodstream properly. We want to use this port for as long as possible, both to avoid more surgery and to prolong the time we use each port-site available to us.
Another new; chatting to Isaac yesterday about his impending IVs (due to kick off next week) he is now adamant that he doesn’t want or need these. In true teenage style, he won’t really explain his thinking about this, other than...
‘NO, I’m not doing it, I’m fine, I don’t need them’
Only he is not fine. He is not bad, but he is not fine. And yes, we could negotiate with the doctors to delay this course (I’ve left it with Isaac that this is a decision he needs to make with his doctors next week) but I’ve reminded him that delaying further will only increase his risk of getting too sick that the IVs need to happen in hospital rather than at home. Or worse, delaying and he gets so sick and he ends up needing more than a two week course and it drags into Nov, Dec... (Christmas?). A comfortable couple of weeks at home, half of which is over half term where we can just chill - which makes the early mornings, the schedule, the side effects so much easier to manage, seems like the better plan to me.
But I get it. It means no showers, no football, no swimming. Being tied to a pump. Your Mum coming into your room in the night, rustling in her weird plastic apron. Waking up to the smell of alcohol wipes. The sore port site. The constant reapplication of tegaderms. The visible lump under your shirt at school. The fatigue. The coughing MORE as a result of the treatment, before starting to feeling better...
This is the first time Isaac has ever come close to refusing a treatment plan.... yes, he moans at times about the daily grind (six lots of nebulisers, two to four lots of physio and a ton of tablets 365 days a year will do that to you) but ultimately he has always complied after a short grumble, and understood why he needed to (the threat of a PS4 ban usually covers us).
I’m fairly sure we can convince him, or compromise and push IVs back a little, but not much. Plus I know that he needs to become more active in this decision making process as he approaches adult care (in less than two years) and that the push back is understandable... but my worry is he rebels further (from delaying to ‘I don’t need these at all!’). Non compliance is very common in CF, as the burden of treatment is so high. Plus, I rebelled as a teenager. Why would I expect any less from my bright, strong minded boy? I just hope he never stops listening to me.
One last thought, please consider having the flu jab this year. If you are not eligible for it on the NHS, you can have it at most supermarkets for less than a tenner. You cannot catch flu from a vaccine. It is safe. You are not using up supplies that are better saved for the vulnerable (they will be covered by the NHS). It may save you a lot of suffering. And even better, YOU WILL HELP STOP THE SPREAD which will protect those more vulnerable around you.
Have a great day peeps x
* Fibrin sheaths are a heterogeneous matrix of cells and debris that form around catheters and are a known cause of central venous stenosis and catheter failure.
