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.
