Cystic Fibrosis, Family

Update on Joe #cysticfibrosis #sensoryprocessing

Hi everyone, thought I would give a bit of an update on Joe and his health and what we’ve been up to!

Last week Joe had his bi-monthly clinic appointment with his team at hospital. It was a bit traumatic for us all as not only did he have his usual appointments with the dietitian, physiotherapist, lung specialist nurse and consultant he also had to have his yearly x-ray (not so bad) and his bloods taken (really bad). Plus, Grandpa came with us and it was his birthday, I’m sure he could have thought of much more enjoyable things to do than sit around in hospital all morning and watch his grandson get poked and prodded from all angles, but alas he came anyway- thanks Grandpa.

So, yes, the blood test didn’t go very well and we have to go back in April to have it done again. We knew it wasn’t going to go smoothly as last time he had to have 4 adults hold him down to get blood out. I did tell the nurse this but she chose, in her wisdom, to ignore it (which she did promptly apologise for afterwards) and lets just say lots of screaming, sweating and wrestling ensued and not a lot of blood was taken.

Joe is a pro at having his chest x-rayed now so he knew exactly what to do as soon as we got in there, the only problem being he is very fidgety, but I am told they managed to get some kind of non-blurry x-ray eventually. We have yet to find out the results of these tests.

Joe has been growing a bug in his chest since October/November last year called haemophilus influenzae, we are unsure as yet as to whether he has had it continually or whether he gets rid of it then grows it again.

This has resulted in a few courses of extra antibiotics, lots of coughs and mucus and now an eye infection. Plus he has been extremely tired and having afternoon naps again which is pretty unheard of for him. He is on one last two week course of oral antibiotics and if that does not work to get rid of it he will have to go back on prophylactic antibiotics (which means an antibiotic that he has permanently) that is specific to that bug.

It is not one of the bugs that they are majorly concerned about but it is not one that they would like him to have so we’ll see how that goes.

Joe is also having ongoing problems with his bowel. This is due to a number of factors but mainly because his diet is so poor due to his food aversions and suspected sensory processing issues. His bowel keeps on getting blocked up and his stomach distends visibly, he has stomach pain and constipation and blood in his stool, plus really bad reflux and vomits regularly- all connected to his blocked bowel. Because the food aversion is a long term ongoing issue that isn’t going to correct itself over night Joe is now permanently on stool softeners and laxatives every day to enable him to have a bowel movement.

In positive news Joe is doing really well with his physiotherapy, so much so that we can now stop giving him manual percussion (this is where you lie him in different positions known as postural drainage positions and “tap” his chest and back repetitively to dislodge mucus) and he can do his physiotherapy semi independently with a flutter (acapella or PEP therapy as its scientifically known) which is where he gets into postural drainage positions and blows into the flutter which vibrates and in turn vibrates his lungs loosening the mucus and allowing him to cough it up and breathe more easily. He does this for around 10-15 minutes twice a day.

Acapella or Flutter for PEP therapy

He has also been given a mouth piece to practice on so that next time we are at clinic they can start trying to measure lung capacity/function with an FEV machine which I think will look a bit like this……

In general he is doing well despite the above issues and has been really brave this week and tried pasta which we are over the moon about! (If you are unaware, Joe has issues with food and a very limited diet so trying pasta was a momentous occasion for us! )

Hope everyone is well!

love R, R and J! x


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