Cystic Fibrosis, Family

Joseph Update December 2015 #cysticfibrosis


Just a quick update to let you know what’s happening, since the last update Joe’s condition worsened and last Thursday we ended up in hospital for tests, Joe was AMAZING and he let them prod him and poke him all morning with no complaints, he had tubes up his nose, things poked in his ear, swabs down his throat, a physio session, sats done, weighed, measured- a few months ago he would have screamed the place down if someone who remotely resembled the brothers, wife’s, uncle of a member of medical staff approached him, now he’s like a seasoned pro!


His Oxygen levels were low/borderline, they couldn’t hear an infection on his chest but he’d lost a significant amount of weight. The Doctor at the observation and assessment unit wanted him to stay in for a 2 week course of IV antibiotics, but after speaking to his consultant,  his consultant decided to try him on a two week course of another oral antibiotic called Cefalexin.

So we are 1 week in to the oral antibiotic and the viral results have come back positive for the RSV virus- you can read all about it HERE, Joe had injections for the first two winters of his life to help prevent from catching it, this is his first year without them and he’s caught it! They said for small children and CF kids it can hang around for weeks and weeks so that should be great fun!

He is still coughing a lot, but the cough has changed from a dry cough to a productive one (He coughs stuff up). He is now eating but not massive amounts so we are to encourage him to eat as much fatty stuff as possible- he’s gone from the 91st percentile to the 55th for his weight so hopefully we can fatten him up over christmas.

Unless he gets feverish, struggles to breathe massively (he is quite breathless already but if his lips turn blue or if he goes very pale he needs to go in ASAP) or lethargic we are hopeful they won’t put him on IV’s before Christmas as RSV doesn’t respond to antibiotics, we have just got to keep an eye on him and hope his condition doesn’t worsen and ensure he doesn’t catch anything else in his weakened state. We will ring hospital again after he’s finished his 2 week oral course of medication.

Happy December everyone!




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