Off to Brainwave

We’re just about to set off for our 1st review at Brainwave and it’s probably come at a good time. Jude is much better in himself this week, laughing and smiling and (dare I say it) looking at things. I was pretty down about last week’ s appointment at the eye clinic but last week he was poorly Jude with his chest infection….this week he’s healthy Jude and he looks like he’s taking things in around him. Time will tell.

Putting it into words can be hard….

….hearing it can be harder.

I took Jude to the Opthamologist today – we’ve known for a while that there were potential issues with his eyesight and while the doctor wasn’t able to make a diagnosis it was fairly clear from what he was saying that Jude either doesn’t see or doesn’t process what he sees, either way not great.  I was asked whether I would like Jude registered as visually impaired..I turned that down for now, no benefit to Jude or us at the moment.

The little man has been referred for an EEG that will measure the electrical activity in his brain in response to light. It will tell us whether messages get from the eye to the brain but it won’t give any indication about whether Jude processes what he sees.

The more I learn about Jude, the less I understand.


…and out again

24 hours is long enough in hospital and I think the consultant’s decision to discharge Jude when I looked at her in horror at the suggestion of a further night in hospital was the right one.  If only I always had such power.

He is much better, on antibiotics again as well as a nebuliser (6-7 times a day), completely tube feb and any medication reductions on hold.

The tube feeding is a challenge. The dietician says that at his age Jude should be on 6 200mls bottles of milk a day…..but don’t feed him overnight. 6 bottles in 14 hours just isn’t possible. Still, the tube means the 45 minute medication session has been reduced to just over 5 minutes.

But he’s better and that’s what it’s all about……

In hospital…..again

Jude had a chest infection last week, another one. Then on Saturday he ‘developed’ a new thing – he started to cough and choke on his own saliva….quite scary to watch, helpless as we were. He’s been doing it every day since and I’ve got to the point of just letting him get on with it, he clears himself eventually but goes a strange colour of red and blue in the process.

Seems the chest infection is still there and they are doing tests on his secretions (what a word) to see if there is anything else that might explain this extreme coughing.

Could be any number of things – the chest infection, the recent reduction of his drugs…someone even mentioned hayfever.

But on a positive note…….hmmmm, maybe next time!

Oh Jude

Well all I would really like is a bit of a good run…… just when we think we have it, something is thrown at us. Today Ian and I felt we had to intervene. Jude has had his ng tube put back in this afternoon. The new medication for his saliva didn’t seem to suit him. It is as though he can’t manage his thick saliva at all. He hasn’t been feeding (fluids) properly and this has had consequences – of the toilet variety. Well we had to help him today, so hopefully that should make him feel a little better.