Dylan Henry Jones - Week 4

Saturday - 24Mar12
Well, it's all go at St Michaels.  If you were thinking of visiting us, two points to make:
1) the ward is currently closed to all visitors except parents for the next couple of days at least.
2) when it is open, if you have been in contact with anyone who has had a D&V type illness in the last 48 hours, please don't come!
Sorry, I don't mean to be rude or unpleasant, we really do like receiving guests, but there is a noro-type virus on the ward and that's not a great thing for small beans to be getting.

On the subject of small beans, and it is interesting to see that Dylan is resorting to type-Jones stock: scrawny.  But with huge feet.  Shame his lungs are nadgered otherwise he'd make a great Flipper.  A comment has been made by one of the medics that perhaps they should stop his diuretics as he's not got any spare flesh on him to lose at the moment.

As to how he's doing.  Well, he's certainly running through the available operations.  Today he had a lumbar puncture.  The medics learned an important lesson that if you remove a babys nappy and then try and fold him in two, it's likely to become a very messy sterile area.  Oops.  Some nastier bugs were found to be in his blood and so they needed to test the CSF mostly to determine how long the antibiotics needed to be administered.  If the CSF was bug-free then a weeks dose was sufficient, otherwise it would need to be 3 weeks.  The initial results are that it is bug free, but as with the blood tests, it'll probably be about 48hours before a definitive answer is given.  On the plus side, he is still on full feeds and (mostly) keeping them down and digesting them.  He's also back to the same ventilation pressures as he was before the infection albeit with supplemental oxygen.  One of the measures of inflammation\infection is the CRP.  This is a protein found in the blood and the greater the amount found can indicate the severity of the infection.  Dylan's CRP reached 163 on Thursday (from about 11) and is now dropping down again currently around 80.  So the fact that the infection was caught early and was treated with a wide range of antibiotics has helped and hopefully will kill the nasties sooner rather later.  Although to add to the amusement in our - well Dylans - room on the  ward one of the isolation babies is now there thus increasing our anxiety about what Dylan may accidently catch.  Especially as the poo that the Mother caught was more dribbly than usual.  All fun and games!


Friday - 23Mar12
The f***-up fairy has been visiting.  Not only is it expected that the femoral long-line is the cause of the infection (it might not be: it could just be a bug, maybe from me as I'm lurgied), but the line was removed overnight.  And the tip was discarded.  Which has got quite a lot of people irritated, not least the Mother.  The tip of the line would be an ideal place to test for infection.  Much better than blood.  Oops.  The consultant is furious and words have been said.  Especially as he gave strict instructions on what was to be done.  In fairness, even if he hadn't provided a plan in the case of  suspected septic line, you should never throw the tip away as it's the obvious place to test to see if there are nasties on it.

On the plus side, one of the registrars has managed to get vein access (two lines into his left wrist) just before we arrived in the morning.  He did say that he wanted to get them in before the Mother arrived.  I think she's getting a reputation!  Not in a bad way, but as she does know what's happening and whilst in the day job she doesn't deal with anyone smaller than her, she is an experienced consultant so I do find that I'm often lost in the conversations as it gets into medical terminology and drugs - it has almost got to the point where she's asked for her medical opinion.  Anyway back to the plot...  The new pereipheral lines will be used mostly for antibiotics.

So Dylan is back on oxygen, and they've increased the pressure that the air is being supplied at.  He's also been taken off food.  Both of these are to allow him to concentrate solely on dealing with the infection.  In fairness, if you hadn't known about the blood tests, he doesn't look that ill, he's dozier than normal but that's visually all there is.  His stomach and scar are both looking great.  As it turns out, the lack of food only lasted the morning and he had an intial feed at about 1pm of half his usual amount with a full feed for 3 hours later.  So, it looks like that once his infection is gone, then he won't have gone too far backwards.  Hopefully.

He had another x-ray this morning and this shows something on the good lung.  This could be pneumonia: he has an infection after all, or it could be water\liquid.  One of the effects of an infection in babys is leaky blood vessels.  It may be that this causes moisture to end up in the lungs which he can't get rid of because he's ventilated. 

Going back to the line tip.  He's being treated with a range of antibiotics and has been since yesterday.  But he's getting a lot to ensure that all possibilities are covered.  Clearly knowing what the bug is allows an appropriate drug response to be given - antibiotics can be very nasty.  Some bugs are nastier than others, at one point a lumbar puncture was suggested in order to determine whether the bug had the CSF (cerebro-spinal fluid) which could then cause meningitis. As it was, it was felt that he was too poorly to have one.  When I left to return to Taunton, an initial result from tests on the blood seemed to suggest that it was not one of these nasty bugs and something slightly more friendlier.

More cheerfully, the Cat at least got some of the food that I left out for him, and he's supplementing his diet with mice (he helpfully ate one in front of me), but here's a video of Dylan pre-infection without ventilator

 


Thursday - 22Mar12
A quiet couple of days down in Taunton (well, for me at least, the Mother stayed in Bristol).  I released the cat from prison (the cattery have been absolutely lovely: happy to recommend!) and back to sort the house out and make some practise cakes for the BTBs wedding.  One at least needs improvement, another seems to have come out well - it's hard to say as the Mother is desperate for the sugar rush and the nurses are cake starved so not exactly an impartial audience.  The cat seems happy enough and spent some of his release trying to sit on my head and mark the duvet cover with muddy paw prints.  Welcome home!

We're going to try and see how travelling between Taunton and Bristol every other day works out.  The reason for doing this is mostly to keep an eye on the house and to look after the cat.  He would be fine in the cattery: it's just that as the weather is nice it would be better for him to be out and about trying to reduce the local mammal population. Or sleeping on the sofa.

On my return this afternoon, things aren't looking quite so rosy for Dylan as when I left.  His feeds are increasing (this is real food through the stomach line) and the remaining drugs including the paracetamol are all oral.  His ventilation is all good and it is now just a question of reducing the pressure of air that is supplied to him to atmospheric pressure: we're just waiting for the lungs to be strong enough to support his breathing all the time.  Except.  The lovely line that they spent ages sorting out to be put in, and then spent ages procrastinating over whether to replace it or not has gone bad.  Oops.  And other such words.  So when I arrived, the Mother was looking somewhat harrassed as she'd watched them struggle to put in a new line (and fail) into Dylan for about 2 hours.  Clearly she hadn't said anything on the lines of "I told you so".  On the plus side, the intravenous feed was able to be stopped immediately as Dylan is almost on full feed anyway: this was the main reason for retaining the line as long as it was.  Now, however, the line although septic is being used to carry the antibiotics used to treat the infection.  Dylan was snoozing as he'd had enough for the day although the nurses were being cautious not to disturb him again in case he started crying.  But he's not having a good day really.  Mostly it's body temperature related - he has a fever - and this means his breath rate is all over the place and his heart is significantly higher than normal (tachypnoeic and tachycardic).  This is a set back.  We'll find out how much over the next couple of days, the medics are hoping it's a straightforward case of line infection in which case they're already doing everything, if not...


Tuesday - 20Mar12
A couple of quiet days.  Or rather that should probably be a couple of days of quiet progress.  Despite the tantrums, he's now off Morphine and he is now only getting his TPN (food) intravenously and at the current increase in the amount of Mother's Milk  that he's at, he'll stop that before the end of the week.  This means that the only tubes he'll have will be the ventilator (CPAP) and the stomach line.  His antibiotics have stopped and his diuretics are now taken orally rather than intravenously.  The paracetamol still goes up his bum (why?!).   As for the ventilation, that too is being weaned slowly down.  He's breathing air (no additional oxygen) but it's being made available at a higher pressure than atmosphere.  This just reduces the effort required to breathe.  The plan is simply to slowly decrease the pressure allowing his muscles to build up enough to be able to support (all of) his breathing efforts.  Even now, he can breathe without the use of the ventilator, just not for very long.   And not when he's screaming.  Well.  Trying to scream (have just picked the cat up from the cattery and yes, the cat is marginally louder). Unfortunately, I think all the photos that I have of him without the mask on he's either screwing up his eyes or screaming...

I'm reasonably confident that I've raised the subject before, but we are lucky with the diagnosis.  By this I mean that although we have had an "interesting" few months, we always knew what the problems were and what the outcomes would be from that be they good or bad.   There are many people who don't\didn't have the luxury of getting an early warning as we did, or even a diagnosis: they're just given a likelihood of problems and when those problems are manifest it may take weeks or months after baby is born for those problems to be resolved one way or another.  I'm not sure how much longer I could have stayed sane (and normal). 


Just heard.  He's pulled out his feeding tube again :)



Sunday - 18Mar12
We would just like to say thankyou.  To all of you.  We have received lots of cards, letters, texts, posts, emails of support, good wishes and luck and we know that many of you are offering up prayers to whoever will listen.  Whatever it is, it's clearly working, because he is doing well, far better than anyone (medical staff included) could have thought, and yes, it is a long healing process and things can and do go wrong, but today we are optimistic of a future with Dylan Henry Jones.  And that is a fabulous thing.  So thankyou all very much it is greatly appreciated and if you could continue for, say, another 16 years?!

So, I didn't forget that it was Mother's Day.  Or rather, I listened to Dylan who told me what he would like me to get the Mother given he's not allowed of hospital yet.  What was really lovely was a Mothers' Day card in each of the cots with a card and a photo of the relevant Bean inside.  Bless!

"They're taking my morphine away.  Not fair!"

 He has had an unhappy morning.  His breathing rate is erratic at times jumping between 40 and 120breaths per minute which is a little disconcerting.  Apparently this is normal for CDH babies and is likely to continue for a long while yet.  But mostly he's unhappy, not sure why but the consultant thinks it may be that his morphine dose has halved over the last 12 hours and its taking a while for him to get used to that.  He is still on morphine (and paracetamol - when the nurse can get the tablet up his bum - diuretics and antibiotics).  He's also getting some food intravenously as well.  On the other hand he's now breathing oxygen at amospheric levels and other than when he's having a paddy remains at good saturation levels

An alternative thought is that he's not actually unhappy, he can just hear his own voice now.  Thankfully even at full bore, it's not actually very loud.  The cat probably makes more of an effort than Dylan at the moment.

He's also continued yesterdays habit of removing lines.  He took his food line out (this goes through his mouth into his stomach) twice yesterday and this morning he removed one of the monitoring cables from his chest (the one blue dot in the photo above).  The food line has been altered so as to go through his nose, but the chest monitoring line has been abandoned.

There has also been a clear out of babies from our room.  We're in the "new" room which only has four beds in it; it's also for the sickest babies.  There are three other rooms each for increasing well babies.  It's a sign of how well Dylan is doing that if there was space Dylan would be moved to HDU (High Dependency Unit) which is the middle of the three rooms.