Chest X-ray, not so great.
Lung function down, again.
Blood glucose test (for CF related diabetes) was.... normal (a MASSIVE relief after a borderline test last year).
He started the day in hospital at 8.30am feeling pretty good. Port was accessed early and bloods all went well. But later, the lung function tests themselves stirred up his congested and inflamed lungs, and we still had X-rays (chest and abdomen this time, for his GI issues) and ultrasound after that, before returning to the main clinic, by which times he was tired, coughing and looking pretty peaky and ill. He coughed up some pretty spectacular looking blood streaked sputum for the lab just as we left. The blood is indicative of inflammation, not good, but it is good to have a juicy specimen for the lab - we cannot treat what we cannot see.
As we wait for the team to review this news, and await the sputum and many blood results, we’re back on Cipro for a few days, with the view of probably starting IVs next week. We’re also working with his dieticians and doctors to find a way of helping with his GI problems (abdo X-ray not good either).
After a long wait in pharmacy (brightened massively by bumping into a wonderful friend; love you Laura!) we got home just past 6pm. Isaac spent the journey home with his face in a bag, nausea taking over his weariness. Annual review is something we both dread but feel hugely reassured by. He absolutely needs all of these tests, and taking a step back and looking at the changes from one annual review to the next is a useful (but at times painful) exercise. Isaac is never enthusiastic about talking to the CF team psychologist, but we keep trying. We are so grateful for the amazing service the NHS provides us - but still, days like this can be very hard.
Lucky for me, I have the best company x
