Portacaths and ports

Hospital tomorrow for this lineogram to check his portacath is working OK. 

Best case scenario; it bleeds back for bloods and takes in IVs perfectly.

Worst case; it’s not working properly for bloods or IVs, and he’ll need more surgery for a new port (also not good because that is one less place to site a port (you can’t use the same vein twice and there are only so many places on a body that you can have a port fitted). Since the life span of a port can be 5-10 years, we could do with this one lasting more than just less than 2! 

Likely outcome is midfield... it will continue to not bleed back, but will happily take IVs, in which case we accept he needs a separate needle for bloods, but happily stick with this port for his much needed IVs.

Isaac is feeling pretty good this week, which feels pretty weird as we will kick off IV antibiotics next week... but knowing this should set him up with the bug-arse-kicking lung health that we want for winter... bring it on! 

No-deal Brexit-shit-lit: What Yellowhammer says:

• Supply chains for medicines and medical products are "particularly vulnerable" to disruption at the Channel ports
• While some products can be stockpiled, others cannot because they have a short shelf life. It will not be practical to stockpile products to cover expected delays of up to six months. 

So just really super reassuring. Thanks. 

Not seeing the woods for the trees.... 

© Pierre Pellegrini

Weekend with little and Obie.

All is good in the woods and sea. 

My heart, it sings. 

Rosa. 

Planning IVs

Lots of great news today at clinic. Lung function is wonderfully, delightfully.... UP. 

Best it has been in months. His team are pleased with his height, his weight, how his chest sounds, his sinuses... pretty much everything! 

We spoke about transition into adult care (this kicks off around now, so he is ready for the big transfer a little over age 16). He will meet his new team soon and have the chance to see the new Papworth Hospital building where his care will be managed. The Royal Papworth has recently moved to the Addenbrookes site where we are treated now; a brand spanking new building with individual rooms for CF patients (hurray!) all the uber mod-cons (state of the art tech, e.g. air changes every minute to reduce infection risks, lifts segregated by bugs that patients grow...). But still, the idea of leaving peads after our long journey together feels HUGE. We have known many of his team from the start and I’ve had more than a few tear stained hugs in that time with them - but Isaac’s attitude to transition today was fantastic (Isaac very much lives for today, worrying very little about the what if’s or the maybe’s). The biggest thing for Isaac, and me, is that from transition onwards, he doesn’t need to invite me. Mind you, he says there is no way he is going without me, simply because he’s too lazy to remember all the details for the many many questions we have in clinic (When did this symptom start again? When did you last have a CT? When did you come off that treatment? What did you eat for dinner last night, and how many Creon did you take for it? Is your cough more of a wheeze or a fruity one today?....)! 

He also had a port flush, and for the third time, his port is refusing to bleed back. He will have a line-o-gram (inject it with dye and X-Ray) soon to check that the port is still working as it should. We can accept it not bleeding back, it means he will need more needles for bloods, but still means it will work for IV drugs going in, which is the main thing. 

The plan is for IVs in October, all going well, which we have scheduled to coincide with school holidays (as he is starting GCSE years, really hoping to up his (circa 80%) attendance record if we can). 

We spoke about the sensitive balance between wanting an IV free quality of life (and limiting the risk of building up drug resistance and the kidney/liver and hearing damage that using toxic IV drugs so frequently can incur) with not leaving it too long that he is so unwell that it means he’ll need to have IVs as an inpatient rather than at home, or worse it will result in long term lung damage and recovery will be so much harder. 

Vigilance is key. Thankfully it is not just Dan and I with an active interest in this now; Isaac too has a much greater understanding and appreciation of staying well and out of hospital as much as we can (the one silver lining of intensive care memories?). This is the first time since 2017 when we first talked about planned IVs that we have actually planned them! Until now he has never lasted the full 12 weeks between courses before needing the extra treatment. 

Today was a good day. Thank you for reading, whoever you are. Have some random pictures! 

Georgia O’Keefe, wave. 

Nan Goldin. 

Persian rug love (a secret obsession of mine!).