The last couple of weeks we have been to and from the hospital more times than I care to think about for William to be monitored and a couple of times when he has been really poorly. Each time we are there a minimum of three hours, usually with a fractious toddler and baby in tow, often at naptime. We never come home without another illness, picked up in the waiting room where all the sick children are sent by their doctors, prior to some of them being admitted to hospital. So we have now had someone in the family ill since December 1st. Which means someone awake at least twice or three times each night in addition to the usual night-complaints and baby wakings. Frankly, I am wondering how I am still alive given the very little sleep I am getting.

So I feel like I am on a merry-go-round of hospital, home to catch up on all the chores, awake all night, hospital, home for chores, awake all night and so on.

William is making slow progress. Five weeks on and he is still not back at school because he is still too unwell. The oedema (swelling) in his body has gone but he still has high levels of protein and blood in his urine. He is on a massive dose of prednisolone steroids which are causing some nasty side-effects. In William’s case these are mostly hyperactivity, grumpiness which manifests itself in autistic-like behaviour, more puffiness, and massive hunger (where he might have eaten three Weetabix in a morning, now it is more like six. Every hour.). The steroids also leave him susceptible to infections, particularly chickenpox, because they supress the immune system. Matthew and I are concerned about him to returning to school which, like most UK primary schools, is a chickenpox breeding ground.

But even though he is clearly still not well and he is suffering all these side effects on top of the illness, he is my little boy who never complains about anything. He’s the perfect patient to my less-than-perfect nurse.

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For more information on kidney disease, nephrotic syndrome and FSGS, visit the kidneybeans pages.