Dylan Henry Jones - Week 3

Saturday - 17Mar12

Go on, throw up over that nice white shirt!

Dylan has remained on the CPAP overnight, so that probably means that that will remain the case until his lungs improve sufficiently that the next level of ventilation support is used instead.  It's also felt that he needs a nice quiet weekend, so that means no heel pricks, minimal movement etc.  Which is convenient as there is an afternoon of rugby to watch!

Nurses are unconvinced by Dylan's Welsh heritage as is the Mother.  Pah!

We will try and get a mobile for Dylan's cot as when he's awake (as he was this morning) he's really alert and bright and something more interesting than the ceiling would probably entertain him.

His feed is up a bit more and seems to be digesting quite a bit of more.  Less of the the vomiting that marked yesterday! 


Right, now where's the Rugby!

"Oh, it's all too much"

On the Alien theme (Fridays photo), CPAP generates an awful lot of bubbles.  I know where Ridley Scott got the Alien slime from...

He's (Dylan that is, not Ridley Scott) is also having minor issues with keeping food down.  Having said earlier that he wasn't vomiting as often as Friday - see 6 whole lines earlier -  he clearly watched the England game and had the same opinion of it as I did: not the score, but the play was abysmal.  Either that or he wasn't terribly impressed with his dinner.  He threw up 3 times in quick succession.  I'll admit to not being the best around other peoples regurgitated food, but just about kept lunch down while cleaning up.  If nothing else, I thought that throwing up over my child would set a certain precedence.  Or getting my own back.  Early.














Friday - 16Mar12
At the ward round, more longline discussion and essentially it'll wait until next week, probably being reviewed on Monday.  A different discussion was on whether he was to extubated (again).  His current ventilation rates are nice and low which is promising that there is potential that he'll be ok on the new ventilation system.  This is Bubble CPAP: this maintains a constant pressure of air for his lungs should Dylan need it.  Rather than having a tube down his throat he has a mask over his nose. 

New invisible face hugger for Alien 5

When we hear that they're going to do it in the afternoon, we make ourselves scarce for a few hours.  Probably best.

As it turns out, when we return just after 6pm, Dylan has done marvellously well.  He's coping better with the CPAP than with the ventilator.  He's now on his front and seems quite comfortable.  Although he can now cry and scream.  Well kind of.  A squeeking perhaps rather than a cry!  Bless





Thursday - 15Mar12
Apparently the surgeons say that the femoral line that Dylan has is good for two weeks rather than one.  Not sure whether this corresponds to the fact that he can't go to surgery today as the emergency list is quite long.  Maybe tomorrow. (Friday).  Unless of course there's any sign of infection.  Hmm.  Not totally impressed by this or the thought of waiting until an infection happens before doing something.  On the other hand.  It's not an emergency (to change the line, so).

His left lung has also collapsed and part of the right lung so the physio is due to come round again to loosen things.  Having said that, his sats are all good so his lungs can work and the weight loss is perhaps doing what the medics said it would and makes the breathing easier.  He's also keeping his food down and digesting it which is all good.  Although he's also generating quite a bit of air (kept in the stomach - we know because his stomach is kept deflated).  And a proud moment, I think I can call myself a Dad as he's now wee'd over me (thankfully there was a waiting nappy otherwise I'd have got in trouble with the nurses).


Tuesday Wednesday - 14Mar12
Time passes.  Clearly.  I'd swear blind it's Tuesday today, but everyone else tells me otherwise.  At a guess, it's me that's wrong.  Oh well, not sure what happened there.


Nothing really happened yesterday (Tuesday).  Grandparents visited and we had a lovely evening out on the town with them.  It is nice to get out of the hospital and hopefully now that the Mother is feeling better and we have some sort of expressing regimen we'll be able to do it more.  Perhaps even getting out to Westonbirt briefly.  As far as Dylan goes - he had more time out of his cot - this time with Dad - and getting lots of stories.  But mostly he's stable.  Which is good.

"Hello"

Today (Wednesday) we had further conversations about lines.  The femoral line that he currently has is coming to the end of its normal life span and we would like it replaced during the day rather than like lastime which was a midnight emergency procedure on the ward.  Finally at the end of the day we were told that he will\should be getting the line replaced tomorrow (Thursday).  Other than that he's had a quiet day and it was another day of cuddles.  He's started his feeds again and this time he seems to be digesting his milk.  He's only getting 5ml a feed (rather than about 40ml for a "normal" baby).


The other interesting part was that he has spent time on his front (rather than his back).  Just to keep him moving.  He's also lost weight (overnight): not bad, I'm willing to sell his weight loss program for those interested!  But mostly today and yesterday - and presumably for many days to come - have just been about weaning him off the remaining drugs (morphine) and reducing his reliance on his ventilator.  On the plus side the course of antibiotics he is currently being given is to be stopped soon as there doesn't seem to be a worry (anymore).




Monday - 12Mar12
Came into see Dylan in the morning and got two shocks.  The first is he's sprouted an extra line from his head.  The second was the revelation that overnight one of the nurses has been reading to him.  That's MY job!!
The extra line is for antibiotics.  Once they've set up the femoral line, they don't really want to add to it as this increases the potential for infection.  Hence the new line.  He's on antibiotics because he may be getting an infection (but not from the line).  Being read to by the nurses is quite sweet to be honest.

His lungs are much free-er after the physio: they're still sucking out an awful lot of gunk from them but it's moving more easily.  Also, despite being off food for the last few days he did manage to throw-up.  His first.  Bright green.  Now there's a talent.

He's also clearly a Jones as the doctors have told him he's fat.  He's gained 1.2kg over two weeks.  Of this most of it is water.  Oedema.  There isn't a problem with it, but he does need to shift it and the ways to do that are either moving around (so he's had his morphine levels reduced so he can move around more), wee-ing lots (diuretics) or steroids (not yet considered).  There are probably other options but these are ones currently being considered\done.  It's felt (by the consultant - one of the nice ones again) that the extra bulk is one of the reasons why taking the tube out on Friday failed.  His muscles aren't strong enough for both shifting lungs and water.

They're also wanting to get a surgical line put in.  Deep Joy and Rapture.  In fairness, the femoral line will only last another few days after which it should be removed due to infection risks.  It is also likely that he will need vein access for longer than those few days.  So we don't have a problem with the procedure.  What we're concerned about is that the farce of last week will happen this week and then suddenly the femoral line will stop overnight and we'll be into an emergency overnight placing of a line.  Again.  Which is crap.  So we're going to try and be a bit more pushy and try and get it sorted sooner. <sigh>

Even more stories today.  We got a new one yesterday from some friends which is lots of fun.  However we were wondering what more we could do: we see Dylan several times a day, not necessarily for very long, but there's little interaction given that cuddling him can be tricky and nappy and wash are at set times of day (between 9 and 10 and then again 4  to 5'ish).  So we thought that if we read more stories to him he would at least know our voices.  So we have the classics.  Just So Stories, Grimm Fairy Tales and Hans Christian Anderson Fairy Tales.  The Grimm fairy tales really are.  I don't remember them being quite so dark.  But the nurses enjoyed listening to the Just So Stories at lunchtime.  Dylan didn't offer a preference.



Sunday - 11Mar12
Dylan is two weeks old.  We're getting there.  Slowly.

Birthday boy!

I'll try and  get some photos up to celebrate.  There are some lovely ones with him tucked up in blankets.
So, yesterdays physio seemed to do the trick with him not being too distressed over it but very wiped out.  Really sleepy.  So rather than repeat the experience that evening he's getting some more at lunchtime today (Sunday).
Other than that it's been a quiet time.  Waiting for things to happen and him to tolerate better the removal of drugs and tubes.  Frustrating too.
On the plus side we did manage to get out onto the Downs with BTB and her boy briefly between lunch, visitors and expressing.  Expressing probably being the biggest priority for the Mother at the moment.  Nice to get out in the sun.