Holiday and home.

We made it. He made it! On day three of the holiday, hearing him rattle and cough, I was sure that I would be booking flights home for him and I, to head straight back to hospital. But the next day, things improved, and the next, and the next. Was the Cipro working, when the IVs did not? (they are still treating the same bug, only less powerfully, so no reason why they should). Did he just need that extra time after the IVs? Was the hours of swimming and running around with his friends, the sunshine (the joy?) helping him clear his chest, while the hospital physios could not? Are we even treating the right bug? We know he is colonised with PseudoA, but he may still have something new, that we’re missing. Despite the IVs, a three week break, IVs again, followed by two weeks on Cipro, I’m no more confident now that his lung function will have improved than I was at the beginning of summer. It’s not like BLACK OCTOBER, by any means, but he is not right, and for whatever reason, he doesn’t seem to be shaking this one just yet. A positive test (for a new bug, CFRD or another problem) would suck, but so does not getting any better, without really knowing why. Stable but not great is still no place I want him to be. 

All that said, France was full of love, and fun, and not a sniff of WiFi! Also, lots of art for me, I will share more in later posts. 

Hope you’ve all had a wonderful summer x 

These three 😍; 

Vacances et espoir!

We will go on our holiday to the South of France with our exceptionally lovely friends. His IVs will finish tomorrow, and after his late dose I will de-access him myself (remove the needle from his port). He will be able to swim, have fun with his friends, eat fresh baguettes and pan-au-chocs from the boulangerie, sleep in the villas dorm with all the boys, feast on BBQ every single day... and be a kid. 

I wish I could tell you that all the news was good today, but his lung function was down again, and he’s still not right. 

Normally at this point his IVs would continue for another week, and they would continue to review him every few days. Instead we get to go away on the proviso he swaps immediately to the strongest oral antibiotics he can take. Good news but they do make him super sensitive to the sun (he burns in winter on this shit) so I’ve been panic buying SPF50 rash vests. He will continue with his six daily nebulisers, increased physio, and if he gets any worse; we will come home early. If he remains the same (coughing lots and very productive, which is CF talk for bringing up lots of icky sputum) we call the minute we get back and head straight back in to hospital. 

Our MDT (multi-disciplinary-team) values his quality of life as much as we do, and it’s forever a balancing act between this and treatment. They praised him today on how much he has been putting into staying as well as he can. He continues to complain very little, so how can we?

A cough-free, worry-free two weeks in the sun might not be possible, but we will definitely have as much fun as humanly possible. 

Avec beaucoup d'amour x 

PS. I’ve been asked to add for all those budding burglars, we have dog and house sitters in situ, but thanks for thinking of us 😘

Clinic review tomorrow

This will determine if Isaac is well enough for our holiday. I swing from utter confidence (as his chest is clearer, and he looks well) to total panic (as his huff still rattles). He is better, but maybe not well enough. A normal course of IV antibiotics is a minimum two weeks, but he’s often had three, even four weeks to get well. This will have been just eleven days. Stopping too early may give the bugs the chance to fight back before we fully squash them, but on the otherhand, if his lung function is not improved tomorrow, then we might be looking at a new bug and these might not be the right antibiotics anyway (tests still pending). 

All that said, we are still full of hope. Even if we have to miss the beginning of the holiday, all will not be lost. We can catch them up by train or plane. Without wanting to sound all Starship 1986.... nothings gonna stop us now.....he will get the holiday he so much deserves. We will make sure of that. 

Wishing you all lovely summer fabulousness x 

Little Anouk with her cousins x 

Some news

Good news and bad, or at least the not so good, and for now, I’ll take that 😊

We are home! For the weekend at least. Not much happens on the ward over the weekend. Physios come less. Doctors make few decisions without a consultant, so it always feels like limbo time. Therefore we’re allowed home on IVs again. Either until next Thursday, when he will be reviewed in clinic, or Monday if he becomes any less well. 

His blood infection markers are at 80. Compare this to Black October, when they were over 1000. This is GOOOOOD! 

Although we got home at 3.30 today, he still needs to be back on the ward at 8pm for a blood test (they have to regularly review the antibiotic levels in his blood, as too high risks kidney, liver and hearing damage). Still, should be a flying visit. 

Isaac is very tired following a sleep free night on the ward and needs to catch up. 

His lung function today was no better or worse than when he started IVs on Monday. But worryingly he continues to cough, rattle and roll; a lot, and struggle with exercise. This is not necessarily unusual though, just five days into IVs, and hopefully we will see a big improvement over the next week. And despite him seeming more symptomatic (coughing up lots of gunk) his LF was nowhere near as low as I had feared to begin with. 

They have confirmed that once well enough they will do a three-day continuous blood glucose monitoring for him, to properly access whether his is diabetic too now. He is drinking about 8 litres a day right now, which is not a risk, but could be a sign. 

We’re still waiting for other test results. Frustrating as we can’t be sure until then that he is on the correct antibiotics. But this is not because of any kind of tardiness, it’s simply that his sputum cultures need time to grow in the lab for them to identify what exact bacteria he is growing. 

We’re so so glad to be home, but going away on holiday won’t be a sure thing until we know how he is/what he is growing in his lungs. We won’t know for certain until we’re just about to leave. 

Anouk says things like “why him”, “why us” as she struggles to understand (she is, by the way, the kindest, most empathetic kid you will ever meet). Tomorrow I should have been dancing along to Patti Smith at a festival, but won’t be as I need to be here. But why not us? And above all, we are a team. I will never let him do this all alone. 

Finding the car

Every single bloody time I park during an admission, I swear to myself that I’ll remember where in the seven storey car park I’ve parked, but after days on the ward, never do! I am eventually home for one night with Rosa (Anouk is away with my sister, and I can’t tell you how much I miss her, but I’m glad that she is having fun. She is a worrier and hates our family being apart, so it is wonderful that she has a distraction this time).

Isaac is slowly improving we think. 

I sat in the garden by the gym earlier while he was doing physio and reminded myself that this is not like ‘that’ admission back in October. Let’s call it BLACK OCTOBER. He is not struggling to walk a few steps in that garden on oxygen, he is not in a wheelchair.... he CAN breathe. It was a timely reminder that things could be a lot worse. 

But he continues to cough, a lot. Coughing like that hurts. His throat hurts, his ribs, his back. Only a CF parent will understand this, but I’ve been delighted by the sputum specimens we have been able to send to the lab, the ickiest in a long time - if there is any other shitty bacteria hiding in there, we will find out now, and then aim some big guns at it! 

Isaac, as usual, is mostly in good spirits. He had his six minute test yesterday (they test at the beginning and end of each admission how far he can run between two markers in six minutes) and he tried so hard, but was so breathless. The physios have him in the gym twice a day which helps him shift the mucous from his chest. We normally protest to do IVs at home as soon as possible very loudly, but this time, I know it’s the right thing to be on the ward. The team all continue to aim to get him well enough for our holiday, and I’m feeling more confident now, albeit for the test results. I’ve asked about continuing IVs myself in France but it’s not an option, for risk of sudden reactions and being so far from home. 

As happy as I am that we should (we hope) get to go on holiday, I’d be lying if I didn’t admit that this admission (after IVs in August, October, January, March, July and July again) didn't worry me. Hopefully the tests he is having this week will help us work out why his lungs are having such a bad time. To put it into perspective, that is six (some very long) courses of strong IV antibiotics a year, when previously, he typically had one to two. 

Thank you so much for all the kind offers of help from our nearest and dearest, of which we are spoilt. Good news to follow we hope x