Dylan Henry Jones - Week 5

Thursday - 29Mar12
 Clearly Dylan has his father's winning ways and has irritated sufficient people at St Michaels that they've decided to send him to solitary confinement.  In Taunton.

(to the tune of Three Lions)

He's coming home

He's coming home

Dylan's coming home

Well, not quite!

Late yesterday evening, it was mentioned that actually Dylan could get exactly the same level of treatment in Taunton (Musgrove Park Hospital).  Then this morning it was confirmed that in fact he was to go to Taunton for the remainder of his treatment\recuperation.  As soon as possible.  Like this afternoon.  So I drove up to Bristol to load up the car with the stuff from the charity house (it's astounding how much stuff accumulates over a month!) and then drove back to Taunton whilst the Mother went in the ambulance with Dylan.  They arrived at about 5pm.

Dylan continues to breathe without aid and is starting to work out the whole breast-feeding malarky.  Again remarkably quickly.  There are issues with him breast feeding as it's quite hard work for him and he's also got to work out how to eat and breathe without getting the two mixed up.  Other than that he continues to do really well.  He is in solitary confinement at the moment.  This is solely to ensure that he doesn't have any nasty (transmittable) bugs.  MRSA being the principal test and this is standard procedure for transferred babies.  Once cleared he will probably end up in SCBU - the lowest end of intensive care.  To be fair, if you didn't know, he looks and acts like a normal baby.  Which is remarkable given where he was on Monday!

So we are back home, which is very fine.  And Dylan is just down the road.


Wednesday - 28Mar12
Well, the hi-flo experiement was a diasaster.  The hi-flo mask as can be seen from the photos below consists of a two prongs attached to a thin tube connected to the ventilator.  The prongs are meant to go in his nose and the tube is traped to his face to stop it moving around.  Given a baby that moves around quite a lot, it mostly needs to be repositioned every hour or so.  Which is what happened.  At midnight it was found that it was mostly useless, so it was removed.

I came in at about 9am to find him without any form of ventilation and doing very well thankyou very much, and that's the way it remains.

One of the things that being on hi-flow was going to give was the ability to try and feed him properly.  So just because he's not on ventilation doesn't mean that this can't still be done.  And as it turns out, he's really interested in breasts.  Typical bloke really!  In fact so keen is he, he decided to remove his feeding tube.  Oops.  The only downside is that at his only attempt, the Mother had already milked and he wasn't allowed to eat as he was about to get an ultrasound.  The ultrasound was to work out the reason for him being yellow.  Yellow that is, not ginger.  He's meant to be ginger.  So jaundice is reasonably common in beans and the IV food that he had been on can be a cause of this, but the ultrasound was required to make sure it wasn't anything more serious.  

So we suddenly find ourselves with a baby who can breathe without support - for 20hrs at least.  And this is a fabulous thing.  We are slightly dumbfounded though.  The consultant seems slightly banjaxed by our lack of ear-splitting grins.  I think we're just not really believing it or waiting for it to go wrong as we've been building ourselves up for disaster or months of hospital the last 40weeks. But it is fabulous.  All we can hope is that he contains to maintain his ability to keep his lungs open and his sats and blood gases remain good.

What now?  He is still on a further 4 days of antibiotics and an indeterminate length of time on the reflux drugs and the drugs for the chest.  And see how long he can keep breathing on his own for.  Hurrah!


Tuesday - 27Mar12

"Who the hell are you?!"

Oops.  Ok so the chicken pox rumour was slightly over-egged.  Blame it on a context failure between myself and BTB!  There is an unsubstantiated rumour that someone with chicken pox was in one of the rooms on the ward on Sunday (not the one that Dylan is in).  Noro-virus has been confirmed however and the ward remains closed.

Right on with the news!  Dylan is and has been doing really well.  He continues to be on good form being quite lively when awake.  He's also reasonably tolerant to heel pricks and a new canula went into peripheral veins with minimum of fuss.

 The final results from the bloods show two forms of infection: a simple'ish one that might be expected from a line infection and a more complicated one of the E.Coli family.  This last one means that Dylan will need to be on antibiotics for between 10 and 14 days (ie a further 5 or 6 days).  Unfortunately the antibiotics are IV and his current canula failed at lunchtime today, so yet again he had to have two different medics trying to put in a peripheral line.

"what is this thing you've attached to my face"

As far as ventilation goes, there are games to play.  He is essentially at the bottom limt of what the CPAP can supply.  The options are , either to have time on and off CPAP (eg 6hrs with no ventialation followed by 6hrs on CPAP) or to use a different ventilation method, hi-flo for example.  No real set method and arguments for either approach.  In the end it has been decided to go for hi-flo on the grounds that is perhaps a better method for allowing him to develop the ability to maintain his breathing.   The hi-flo essentially maintains a peek air pressure so that his lungs should remain inflated at all times and just provides support to him at a greater granularity the closer the support gets to him breathing on his own.  If that makes sense... He's not totally impressed with the new ventilator: it's just two prongs that go up his noise and he's removed it a number of times already in the very short time he's had it in.

It has also been decided that he needs a calorie boost. So whilst he's getting the amount of food a "normal" baby would need, he probably needs more than that as he is working harder than most babies in order to maintain his breathing.  The calorie boost is achieved by adding a supplement to his milk allowance.

The effect of Quantum Mechanics

Other than that he's a fairly normal vomity-poo machine.  Otherwise known as a baby.  He has a lovely range of books but I'm not sure whether he has any preference between intellectual content.  He seemed equally happy and content with Giraffes Can't Dance, Oliver Twist and a book on Quantum Mechanics.  Perhaps the latter made him more sleepy?  Hard to tell to be honest!




Sunday - 25Mar12
An interesting day.

"Wow, I've been here a month!!"

Dylan seems to be fighting off the infection.  He is still ill and on antibiotics, but his ventilation pressure has been dropped and is now down to what it would have been on Friday if he hadn't got an infection.  So that's all good.  We can probably say that the infection has taken 48hrs off the healing process.  It should be said that his healing process has been quick.  And today he was much more lively than he has been over the last two days.

On the downside, the ward has been officially closed.  I'm not sure what that actually means over above only parents into visit.  However, it's now "barrier caring".  Everyone - parents included - has to glove up and wear an apron when inside each of the rooms, obviously changing gloves between patients! Not really skin to skin contact.  As well as the noro-type virus, there's also chicken pox on the ward.  Yay. 

And, yes, the ventilator is always this skew.