The CF cough is different. Hard to explain if you’ve not heard it. I would say guttural, but I just looked it up and it says harsh and from the throat. This is deeply from the chest. From every muscle and fibre of his being. Violent. Vomit inducing. Loud. Rumbling then escalating. Exhausting.
These last weeks have been tricky. As a Mum, the stress of a CF exacerbation, plus issues with blood sugars, unknown seizures and tests, culminated in physical, mental and pretty weird ways. Minuscule in comparison to what he has to go through, but hard nonetheless - not only for me, but for those around me. I wept for an hour at a petrol station recently, unable to fill up because the hire car we had was like an escape room puzzle that I could not fathom for opening the fucking petrol flap. This is not normal for me. Then a an old Irish tune that Dan used to sing Isaac as a baby crawled in as an ear worm and I found my cheeks wet with tears before I realised it.
CF is not only a disease of the lungs. It affects most of his organs, most notable his digestive system, kidneys, liver, pancreas and his fertility. As a child he experienced the gastric issue’s extensively (DIOS) but these have gladly lessened over time. His liver and kidneys suffer predominantly because of the aggressive antibiotic treatments that are essential for his lungs. His pancreas suffers because the enzymes which should be released via a duct to digest food are unable to, as that duct never formed in utero, blocked by mucus, and so slowly erode his pancreatic function from within. This, in turn, impacts the pancreases other job; to produce insulin. Leading to issues with blood sugars or CF diabetes. Seizures, they are not part of the CF package. That’s all new and confusing.
He was not accepted onto the clinical trial, as his health is not deemed stable enough. Disappointed doesn’t quite cover it. As we approach his birthday, we focus on getting him well and looking forward to easier times, and as this post describes, we enjoy the life amid the noise. Love x
Hazy lush nights with amazing friends ❤️
