Our lovely community nurses visited yesterday to take a blood level for the anti fungals Isaac has been on the last month or so. This is to check the level of the drug in his bloodstream is high enough to be at a therapeutic dose. Kind of different to his normal antibiotic levels which he has on IVs, which are to check for that, but also more importantly that the level is not so high it fries his liver and kidneys. For antibiotic levels, blood is taken from a finger prick as taking blood from his port might mean we have an abnormal level of residual drugs in his port line (in case you are new to this blog, Isaac has a portacath fitted in his chest, which is a little device connected to a major vein in his chest, and implanted under his skin - this enables us to easily access his vein when we need it, by putting in a short (1 inch) gripper needle through the skin directly into the port - making venous access much easier than inserting a cannula or other kind of line, as after years of IV treatment, his veins are shot). However, for a Posaconazole level, he only needed to have blood taken from his port, which needed flushing anyway (every 4 weeks). Great. Only, blood was not forthcoming from his port. It simply wouldn’t bleed back. This is not terrible (for the Posaconazole level, he ended up having a finger prick instead) but it is frustrating, as it’s possible his port has given up bleeding back for good (it happens) meaning he’ll always need needles for outputs (bloods) and his port will only be good for inputs (drugs).
Anyway, that was quite a long ramble when really what I wanted to say was that he ended up two needles and two finger pricks in, and a bit of a bloody mess at the end of it. But did he complain once? Nope.
He’s been really well these last few weeks - but his cough is beginning to increase. I had hoped the antifungals might be the magical factor in him lasting longer between courses of IVs, but now I’m not so sure. At least I can be sure of his fantastic let’s get on with it attitude.
I wish I were half as strong as my fourteen year old son.
Have a great day x
Georgia O Keefe
