Cystic Fibrosis, Family

Off to Hospital

Hi everyone,

Our little man is a bit poorly, we have been quite lucky this year he has only had one bout of tonsillitis so far but unfortunately now he has caught a virus. Despite our best efforts to keep him away from infection and bugs its impossible to protect him from everything.



Joe had been eating loads the past few days, he’d gone pale and was also sleeping a lot- this was coupled with a very poorly tummy. Then the coughing started which is when alarm bells ring! I rang his team at hospital and they asked us to bring him in for a check up. The bad news is that he has a virus, a sore throat and has to be on extra antibiotics for two weeks, the good news is that he doesn’t have to go and stay in hospital and have IV’s which we were dreading.

Although they couldn’t hear any infection on his chest he is bringing up a lot of mucus- much more than he ever has done before. For the  first time in his little life he has started to sound like what I imagined a CF person to sound like. After physio he is coughing and bringing up mucus like you or I would if we had a very bad cold. He coughs when he laughs and you can hear the sticky mucus catching in his throat and his chest rattling. It’s quite scary.

Before this I suppose me and Rob had been in a little bubble of security and had protected ourselves from the inevitable. We had lulled ourselves into a false sense of security and because Joe has seemed well (if you ignore daily meds, physio etc) its very easy to pretend that nothing is wrong and nothing ever will be. Of course we never really forget that Joe would get poorly again and that this condition never goes away, but most of the time we just try and avoid those thoughts.

Hearing him cough like an old smoker and his rattly little chest when he laughs brings it all to the fore again- every cough sends a shot of fear through us.  And the feeling of helplessness, the lack of control over the situation makes it even worse.


All we can do at the moment is keep giving him his medication, his extra antibiotics, give him extra physio and inhalers and keep him away from other sick people- basically keep him warm, safe and loved. Hopefully if we stick to all this then he will be able to fight off this virus and it won’t spread to his lungs. Last time he had a virus he had it for months and ended up on IV’s in hospital but hopefully it won’t come to that this time. And if it does?  Well, we’ll get through it together.

Our consultant has also told us to keep up with the fatty high calorie diet- the more weight he puts on the easier it will be for him to fight off bugs and infections. The reason  why he is eating so much is its his bodies way of protecting itself and hopefully by eating more he will have more energy to fight this thing off- but this also leads to him having a poorly tummy, he needs extra fat to survive but his body can’t digest it properly, even with his medication its not 100%.


It must be quite exhausting though eating all the time! This morning for example (he is 17 months old) he ate a bowl of cereal with full fat milk, a yoghurt, a box of raisins, a slice of toast with peanut butter, 1/2 of my bagel, some of daddies cereal, 1/2 of my yoghurt- and he still asked for more! He then had 5 oz of full fat milk before his nap! And around three-4 beakers of juice. This all before 10 am! It feels strange sometimes feeding him so much but if he needs it then that’s what we shall do! And he’s such a slim jim!



Any way, fingers crossed all round that he will fight off this virus and he will be well enough to enjoy a happy Christmas time with his family and all his new toys!

Hope you are all well-

The Crawshaws


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