Dylan Henry Jones - Month 9

Sunday - 25Nov12
 The x-ray came back and that was ok.  Overnight they put in an NG tube and tried hourly feeds which he didn't really tolerate so they've gone to two-hourly feeds.  They also provided a box.  This just provides an oxygen enriched atmosphere in a more manageable fashion than holding a tube in front of his face.  He needs the oxygen as his saturation levels plummet without it.  The oxygen (and the box) ends up a little like a greenhouse which makes it easier for him to cough and thus more comfortable.

Poorly boy.  The large tube is providing oxygen enriched air.
The box works better (at providing a more oxygen rich atmosphere)

By the afternoon he was worse: just the manner of his breathing, much more laboured and his insides aren't work too well either.  Diarrhea is not something we really need right now.  He also doesn't seem to be digesting all his feed.  Of the 50ml he gets he's only digested about 30ml of that before the next feed so he might get something (domperidone possibly) for that.  In the morning (Monday) they will also take samples from the back of his nose to make sure he hasn't got anything (else\in addition) nasty in the way of bugs that has resulted in two bouts bronchiolitis in quick succession.

In the box, no one can hear you scream...
Sad but true.  He's not got the loudest cry but at the moment it's
quite pitiful and it can be quite hard to make out over the oxygen
generator and the ward

Saturday - 24Nov12
Oops.  He's no longer over 13lb. Pants.  The problem with the cough was that it made him throw up.  Which means that he's not eaten as much as he would have done.   He's thrown up over half of his food in the last 24 hours.  So he's lost about half a pound since Tuesday although only really been poorly since Thursday.  Importantly the cough has progressed into bronchiolitis.  So it's Saturday night and we're in hospital! 

He's just (20:30) had a chest x-ray and we're waiting for the results from that.  But he's got a fever, a horrible cough which is more frequent than normal, an increased respiratory rate (it was running at about 90 per minute last night), poor feeding and poor bladder output, and lethargic.  He's not a happy little boy at all.  The plan as far as we know is to keep him in overnight, possibly giving him some oxygen as his saturations are below what they should be and they might put an NG tube into him so that he gets at least some calories today.


Thursday - 22Nov12
Well, Dylan has (just) made it over the 13lb barrier.  This may well be due to the embarrasment of weighing less than a 7week old...  That's not to say that he's not eating.  He definitely has a Jones appetite and attitude to food.  If it looks like it might be edible he'll give it a go, books, doors, fluffy bunnies, whatever.  Except water.  Still.

The helmet appears to be doing its job and they seem pleased with the progress (and change) that it's making.  In the first week of having it he got a pressure sore on the side of his head which meant that we had to cut back the amount of time that he was wearing it for.  That's now mostly healed with time and some minor adjustments to the inside of the helmet.  In terms of head shape, the difference in the diagonals has now dropped from 18mm to 12mm so it's becoming more symmetrical and his head is now longer than it is wider with the ratio dropping to below 1 ( 0.97 compared to 1.04).  All good stuff.

Other than that he's mostly been whingey!  Some of that may have to do with yet another cold and getting the flu vaccine.  But he has now found his feet...

 

Monday - 05Nov12
Just a very quick message and enormous thank-you to everyone who has donated to the Dylan's Dad's Ride.  We have raised a total of £5696 to be split between CDH UK and Ronald McDonald House (Bristol).  A truly splendid effort.
 

Monday - 29Oct12
Dylan is now eight months old.  Hurrah!!
He seems to be reasonably happy in his helmet - and we're used to it too: it seems odd when he's not wearing it.  Strange considering it's only been a few days and we're still rubbish at putting it on and taking it off.  Today is the first day that it'll be on all day.

Like all babies, Dylan has a firm view on what he wants and doesn't.  He doens't like water, but he will have some of what you're having thankyou very much!