I tried (and failed) to access Isaac’s port for the first time today.
He took it like a trooper. I need to practice more to give him that independence for when our beloved paediatric community nurses leave us when he turns 18.
While I’ve prepared, mixed and administered Isaac’s IV drugs at home since he was a babe, and de-accessed his port at the end of the course (like popping a cork back out), I’ve never yet done the plunge. Imagine sticking an inch long needle into heavily scarred tissue in your child’s chest? Complete with sterile anxiety? Not fun.
But it’s OK. We agreed together that I have a few months more to practice. I actually accessed him OK (meaning I hit the spot and got the needle in the right place) but may have nudged the needle while unclamping the line, which is easily done. Magnificent nurses have tried and failed on him three times in a row, for an amateur, I’m taking it as a win! It wasn’t quite as bad as I had feared. He is doing well. The post surgery side effects have been significant (you cannot imagine), but he’s so much better in himself.
Thanks to an unexpected bonus from work, we’ve been able to book our first overseas family holiday in years. I cannot wait to treat them all. We just need to find some affordable travel insurance now, which is challenging.
We’re also plotting our next fundraiser. Having reached £80,000 in fund raised for the CF Trust since Isaac was born, I have my eyes on that 100k.
Love to you all x (Pic; from my visit to the Frida Kahlo house (work trip) which I still dream of).
