This year so far has been a bit of a roller-coaster, what with moving house, charity balls, birthday extravaganzas, the usual cystic fibrosis shenanigans, re-decorating etc etc etc we don’t know whether we are coming or going round here some days!
I have found it very stressful recently trying to manage all the everyday life stuff, around the big life events and caring for Joe as he’s not been so well.
Last weekend Joe took a turn for the worse, he stopped eating any food and was getting very hot and pale. We thought it may have been due to being so excited about seeing his cousins at Grandad’s 60th birthday party- he gets distracted very easily and it doesn’t take a lot for him to be put off a meal. As the weekend went on though it continued until Monday morning when I ended up ringing the hospital (crying obviously as I always cry at the most inopportune moments) really concerned. He had a high temperature, and just lay on the sofa under a blanket shaking and saying weird things like “when I go home I’m going to have a party ring”. He tried to stand up but couldn’t manage it and complained his knees hurt, which I think was just exhaustion from not eating for a few days plus the fever.
I gave him some biscuits as he finally started saying he was hungry and some calpol and he seemed to perk up a bit so the nurse said to wait till later to bring him in (he had his usual clinic appointment that afternoon luckily) and he seemed OK, albeit pale. I figured that he was just so hungry from starving himself for the past few days that it had made him weak.
When we got to the hospital he was examined by the consultant- turned out he still had a fever and also a chest infection.
So two weeks of kefalexin antibiotic and doses of calpol to manage the fever have been prescribed. We really weren’t expecting a chest infection as he hasn’t been coughing or productive after physio, but there it was anyway lurking around in the top of his right lung.
On top of all this we have had the continued saga of food issues- the gagging, food anxiety, food refusal etc etc has not improved in anyway despite all our best efforts- day in day out of battling around food, every meal time a battle ground, trying to sneak in calories in milkshakes and drinks, blergh. I’m too exhausted to even write about it.
Anyway, the hospital are referring him to a child psychologist to see if we can get to the bottom of these feeding issues. Rob and I, the nursery and the hospital all are leaning towards a textural issue/ sensory issue but like the hospital said none of us are experts in this area and we need more help.
It’s a relief in a way that we are finally being listened to and offered some real help for this issue. No one wants their child to be referred to a specialist. But I am relieved because I can’t help him on my own.
They’ve told us not to hold our breath for a miracle cure, this is going to be a very long, slow process if it even helps at all, but we’ve got to give it a try.
Anyway, after all this stress and upheaval I’ve decided I need to focus on having a bit of fun and doing some stuff that I love like reading, crafting, creating. And I’m also going to try and do more fun stuff with Joe- this bloody cystic Fibrosis and all the other issues it causes can sometimes envelop everything we do as a family. I need to focus on JOE HIMSELF not this disease he just happens to have. Sure CF is inescapable, and his feeding and eating issues arise every meal and snack time, but its not all we are about.
And with that I’m off to my art class while Joe’s at nursery playing with his friends. It’s not all bad.
See you soon!
Love Rach, Rob and Joe xxx