2016 so far has not been the best year for us, although we have had some great moments and our two week Easter holiday was fantastic, health wise 2016 has been and is continuing to be a challenge.
Recently we have had to face a number of challenges, Joseph has been in and out of hospital with different viruses and infections but nothing in particular has come up on cough swabs. He is now currently coming to the end of another course of oral antibiotics which doesn’t seem to be working. He has a recurrent productive cough that will not go away, we have CF clinic next week so hopefully they will be able to check him over and sort him out there.
We have been looking forward to the warmer weather but now it’s here it has come with a new set of challenges! Joe does not seem to be able to cope well in the heat. As with all people with CF he loses a lot of salt through his sweat and this can cause complications in hot weather (please see THIS POST for more info on why people with CF need to take salt replacement) so we have experienced excessive sweating, confusion, vomiting and exhaustion all through the combination of Joe not being 100%, the hot weather and him being a toddler who runs around at full pelt regardless of how you try and calm him down! Another issue is that if he is excited he will not eat or drink which adds to the problem and so social get-togethers in the hot weather or in party environments his over-heating and exhaustion can be tricky to handle.
We have had issues with Joe’s nursery as well recently. They have not been giving him the standard of care we would expect even for a non-CF child, to cut a long story short we picked him up from nursery last week and he was barefoot, sun burnt and filthy with soil and snot smeared over his face and soil all over his hands. It is not recommended that children with CF go routing around in soil as it can contain nasty bacteria that cause chest infections in people with CF. I would not have been so concerned if they had at least washed his hands thoroughly after he had been digging in the mud, but there seemed a total lack of hygiene. Phone calls and a long email were sent to the nursery manager and hopefully his standard of care will improve from now on. Joe’s CF team are also going to go back in to nursery to give the staff more awareness training next week.
I believe part of the problem with nursery and a big challenge that is going to follow Joe for the whole of his life is that he doesn’t look like he has a disability. To all intents and purposes he looks and acts like a perfectly healthy little boy and of course that is how we would like him to be treated.
But it is also important for others to realise that although he looks healthy on the outside, a lot of time, effort and heart ache goes in to keeping him well enough so that he can appear the same as his peers and live as normal a life as possible. The nursery staff do not see the physiotherapy, inhalers, 15 doses of medications that he has to have before nursery starts at 8 am along with all the “normal” things you have to do to get ready in the morning! Only to repeat them again at night! They do not see the weekends spent in hospital, the clinic appointments, cough swabs, breathing exercises, they do not hear him coughing ALL NIGHT LONG. And I suppose in that way it is easy to forget that he has a condition that needs to be managed and that infection control is a serious issue!
So when I ask nursery to make sure his hands are clean and that he shouldn’t play in stagnant water and filth I think that’s not a lot to ask really in the grand scheme of the day!
To top this all off Rob fell off his bike and broke his hand last week too! SO we’ve been having a grand old time- plus the fact we started potty training in the midst of it all!
Luckily potty training is going really well- it was something I was really worried about starting but I think Joe is ready and he has taken to it really quickly.
So, yeah, there’s an update on our life at the moment! The only way is up baby!