Love bombs

Two weeks of Cipro, and he seemed less symptomatic, but just a few days off, and he has been coughing again today. Hoping this is just a blip. Ideally, we want to put IVs off until July now, so we can go away afterwards while he is at his best lung health. 

Cipro and sunshine? Really don’t mix. This is OLD NEWS but he  learnt the hard way after jumping in and out of a pool all day last week. Hell, he gets a sunburn in winter on that antibiotic! He is so grown-up in many ways.... but we can’t rely on him caring two hoots about his health just yet. 

We have more information about CFRD now (CF related diabetes) and it seems he has a very high chance of developing this, and we’re to try and lower his carb intake to delay onset. We have yet to have any advice on how to do this exactly, so will be working with his Dieticians. To add diabetes to his long list of treatments would be, I fear, pretty traumatic for him (regular blood glucose testing and insulin injections a few times a day), but in true Isaac style, he’s not worrying about it until it happens (and currently has no interest in a low carb diet at all!). As well as the added treatment burden, CFRD will negatively impact his lung health, so definitely something we don’t want for him (expletives removed). 

His latest bloods also show a rising sensitivity to aspergillos (the flagitious fungus) that he also grew in October last year, and he continues to have heavy growths of PseudomonasA (the bastard bacteria).... all the while I read about the antibiotic crisis in the news (which I have blogged about here) a very real crisis that very few people seem to be talking about. 

On the flip side, reading other CF stories, I realise how fortunate we are that he has recovered most of his lung function following his time in ICU - not all are so lucky (and phrases like ‘sudden decline’ continue to chisel away at my mental wellbeing). So like him, I try to live more in the present day, and today.... things are OK. I have a few days off and plan to lay a love bomb on all of my kids in this time. Happy May to you all x 

Leggy, freckles, smiles.

Isaac’s coughing has been increasing day by day. 

His test results come in on a rolling basis (we are almost never not waiting for results); his infection markers from his latest bloods are looking OK, but he is still regularly growing (antibiotic sensitive) PseudoA, NTM first checks look promising, but take six weeks to prove clear, lung function is stable. His nasal polyps are back already, and he will likely need further surgery in the future. 

As we’re just six weeks clear of his last IV antibiotics, we’re trying a two week course of Cipro (orals) hoping to eek things out a bit longer before the next course. He is doing everything he can to stay well; meds, physio, nebulisers, extra exercise. He has stepped up his game.... will his lungs? We’re trying steroid nasal rinses to see if we can shrink the polyps. 

His latest ‘fasting blood glucose’ test result was abnormally high, which is new for us. This raises concerns of CF related diabetes (CFRD), a very real condition which has aspects of both type 1 and 2 diabetes, and is insulin dependant. In Isaac’s case, the duct from his pancreas to his guts was blocked in utero due to his sticky mucous. This meant he was completely dependant on synthetic enzymes (Creon) to digest any fats and proteins from birth, as his enzymes cannot escape his pancreas. In turn, these trapped enzymes damage the organ from within. And the pancreas’s other job? Insulin creation - hence the high likelihood of CFRD. This is something that will be monitored closely. Right now he doesn’t show any other obvious signs of CFRD as his height and weight are both good, so we wait, and hope. 

We go away this summer with friends again, and the hope is to schedule IV antibiotics in before we go, to ensure his lungs are tip-top before we go, reducing the chance of him getting another exacerbation while we’re away. Timing wise, this can be tricky, either we squeeze in two courses, by doing one soon, or hope he can wait, and have one course, but later. 

Always so much to think about. 

I got home from work tonight, and the kids were all playing football in our sunlit garden. I watched them for a moment. Isaac, all curly dark hair and freckles, Anouk all leggy and tanned, Rosa so dinky and all smiles. I am so, so lucky. 

£70,000 and counting....

Our skydive has now made over £6,000 (my employers will match what I make at work up to £500 per fy, and huge thank you’s to the Vargas Brothers for the most amazing fundraising BBQ) which means our running total; and this is by no means just me, but our whole family and bloody lovely friends, is now over £70,000 raised for the CF Trust  since Isaac was diagnosed in 2005.

Ahhh, words fail me.... Just thank you thank you thank you! It really does mean the world to us to feel so supported in this fight for a better future for Isaac and others with CF. 

Some pictures from our skydive. Shell, Jess and Bon.... there is literally no one I would rather throw myself out of a plane with. Love you all. 

CF update to follow, CF clinic and ENT review tomorrow. Cough slowly increasing x 

I am not dead.

Skydive complete! Pictures to follow. Can’t thank everyone enough for the support.... over £5000 for the CF Trust. Means the world to us all. 

For Shell, Jess and Bon, my fellow jumpers.... I love you so much, thank you thank you thank you x x x