Dylan Henry Jones - Month 10

Sunday - 23Dec12
Dylan has a tooth! Possibly two.  It's hard to tell with a wriggling 10 month old.  It does however explain the hour of screaming we had the other night.  This was only halted after application of some gum painkiller.  Of course, the problem again with wriggling babies who are screaming, the actual application part of the painkiller (rubbed into the gums) is a little tricky which took at least two goes.  So maybe he stopped screaming because we'd anaesthetised his whole head rather than just the gums...

Other than that, he's still not fully recovered so is still a bit wheezy at times and his appetite whilst good is not quite back to what it was (or we think it was given we can't remember yesterday let alone last month!).  Custard and blancmange are the new favoured foods and are also about the only way we can get milk that isn't from the Mother into him.  But he is very much happy in himself - the rest will get there eventually - and most of the time is a very cheery soul interested in picking things up and putting them down again.  Also causing vast amounts of carnage at every given opportunity.  Which is exactly as is should be.

Merry Christmas to all and wishing everyone the very best for 2013.  Thankyou all very much for everything.

Dylan says "Merry Christmas and a Happy 2013!"

Thursday - 20Dec12
On the positive side, Dylan has gained weight since he came out of hospital and his head is getting more "normal".  So Dylan is again weighing more than 13pounds...  Less ideal is that he's actually only put on 4oz in 9 days.  Which isn't great.  And his head circumference has only grown by a millimetre (or thereabouts) in a month.

But he remains a bouncy chatty little boy who likes eating (most of the time although days are clearly colour co-ordinated and so occasionally he decides he won't eat anything red...).  Drinking on the other hand is rapidly becoming a lost art.  Except from the Mother.  Which is a bore.  As is quarantine.  Oh well!


Monday - 17Dec12
 Well, we've been out of hospital a week now and so far so good.  I think.  Dylan's doing well and remaining healthy.  He is eating reasonably well, but he's not drinking much at all which is a little bit of a worry.  But he's lively and not too grouchy most of the time.  Unlike his parents!  Probably bored however.  Being confined to barracks is dull for a sociable little boy.  It also makes simple things like going to the shops a bit more complicated given we're not allowed to take him.  His various medical appointments also need some thinking about given that appointment rooms really are a place where he'll catch something and are therefore somewhere to be avoided.  Oh well!
 

Practice bouncing on his new bed.  Not sure when
he'll actually get put in it.  Possibly when there's a roof
over it and we've managed to clear some space in his room!

The local pub (The White Horse) has a table top sale which in December they asked us if they coul d raise money for CDH UK.  Because Dylan was in hospital the Mother was actually able to pop in for a bit as originally we'd planned to be away.  Anyway.  They raised £100 for CDH UK through raffle ticket sales and renting out table space.  We picked this up last night and will send off to the treasurer.  Very grateful and very impressed with the amount raised.

 Monday - 10Dec12
... and he's home.  With no tubes. 
His feeding is still off so he's getting weighed in a week and if he hasn't put weight on then there is talk of re-introducing the NG tube.  He should be getting at least 450calories per day just for "ticking over".

It's also been strongly advised that we shut-up shop for a few months in order to reduce the risk of infection to Dylan.  This includes not going shopping with him.  Not totally happy about that as I think we'll all go slightly insane.  Dylan certainly likes being out and about and gets ratty if kept indoors without (additional) company.  We shall see.


Purely for interest, below is a video of Dylan's chest when he was really struggling with the bronchiolitis.  Because we'd been seeing it for a few days prior to admission into hospital we were used to seeing it, but the nurses were reasonably horrified.  Should stress, this isn't his normal breathing routine (although his normal isn't "normal"...).

Sunday - 09Dec12

Do I need to add anything more?

 Dylan came off ventilatory support early in the morning and hasn't really needed any oxygen since.  He's taking more from the bottle but can't really handle the volume of 3-hourly feeds yet so he's still a little vomity.


Saturday -  08Dec12
 Not very much happened on Thursday and Friday, the numbers on the ventilation continued to drop very slowly and he became more brighter, more interested and certainly Friday evening he was wanting and able to be sat up sometimes without support for up to about an hour.

Today was a real breakthrough as he decided that maybe food through the mouth was perhaps a good thing.  He managed 4 bottle feeds throughout the day.  He's only getting small amounts (54ml) every two hours and throughout the day his aspirates were low (ie he's digesting his food at a reasonable rate).  His ventilation support is minimal, but required.  Hopefully over the next couple of days this can be removed and we can up the volumns on his feed to more sensible amounts so that we can look at feeding every three hours.

I'll post photos up tomorrow as they're all on the Mother's phone...



Wednesday - 05Dec12
 Another day of progress.  The pressure and the level of oxygen both dropped off again today.  The larger issue now is that of feeding.  His rate of digestion is quite slow and at the moment he's refusing all forms of eating other than direct access (NG tube) and that with small amounts (30ml) and at regular intervals.  Which isn't going to get us home any quicker!

On the plus side, he's decided on and received his Christmas presents.  Clearly a set of brightly coloured ECG leads and the plunger end of a syringe are in fact all a little boy wants.  He's definitely more alert even than yesterday and we spent some time with him trying to get him to sit-up.  Obviously his physical development has gone marginally backwards.  Before his illness he favoured his left hand, for the last week or so that's been wrapped in bandages so he's been unable to use it and so no favours the right.  Well, we thought it interesting...

And he's causing chaos and mayhem having pulled out one NG tube whilst smiling sweetly at the nurses, trying very hard to remove the ventilator and generally holding onto anything within arms reach.

 Tuesday - 04Dec12
I think it can be said that Dylan is on the mend.  Both the pressure of the ventilation and the oxygen levels have both dropped marginally and he now has two hands with which to cause chaos and mayhem.  He's already destroyed two ECG leads today.  Mostly though, he's just brighter, more interested in things. And smiling.

He's still a tired little munchkin, being fed every hour on the proviso that he's digesting food and on ventilatory support but definitely on the road to recovery.

Thank you all for all the presents, kind words, thoughts, sacrificed offerings to the gods, erection of shelves and manufacture of Christmas puddings.  All very much appreciated.


Monday - 03Dec12
No real changes.  The (percentage) oxygen levels have been dropped to 36% (from 45) from (very) early morning through to late afternoon and he's mostly tolerated those.  The pressures haven't changed.  He had some physio in the morning to loosen up the contents of his lungs and we have been moving his position every hour or so.  He has also got put into "the chair".  See picture below!  To allow him to get some time sitting upright which again is good for helping to loosen up his lungs.

Still being a grouchy little b****r, which is understandable in the circumstances but some more smiles would be nice!  None since Saturday.  He has managed to pull off some of the sensors and tomorrow when the bandage comes off his left hand then we really will be in trouble!

... in "the chair"

 
Sunday - 02Dec12
Another quiet'ish day.  Hurrah!
In his awake moments he's getting more irritated with the situation which although a good sign, means that vigilence is required to stop him pulling anything important out.  Sedatives perhaps?!

His feeding\stomach contents are still not quite right so occasionally misses out on the hourly feeds and they have tried playing with the oxygen numbers reducing the percentage to 40% (from 45% - the pressure will probably be the last thing to be reduced as that's helping keep his lungs inflated) - which kind of worked although his heart rate was higher for several hours afterwards averaging around 140 rather than 115-120'ish.  He didn't have any physio today, but he gets turned to each side for an hour at a time and that seems to move lung nastiness around quite effectively.  Or so it sounds from the coughing that usually follows most movement...

But generally, another steady day, no great improvments, but definitely not any backward steps.

 
Saturday - 01Dec12
I think the word of the day is "phew".
As it turned out he ended up having a blood-gas done late last night and then again this morning.  All of them (four in total) showing roughly the same sort of numbers.  Whilst the numbers may be bad, they are at least stable and it is likely that Dylan is used to this.  When he is better, we will get a blood-gas done so that we have a rough idea of what we to expect next time he comes in.  Which he will.  The bronchiolitis has made the lungs hyper-sensitive so the next time he gets a cold or similar it will hit his lungs harder than it might otherwise have done.  There is nothing to be done about this, we were expecting a "difficult" winter season!

So, today has actually been a good day.  We got smiles!  First smiles in over a week.  The threat of the I-word has receded as he is clearly more alert (when he's awake).  We are faced with the bigger problem of trying to stop him from removing his ventilator or NG tube which, whilst irritating, is a good place to be.  Clearly he is on the mend, even if is still on 45% oxygen.



Friday - 30Nov12

<insert litany of swear words here>

No,  it's not really that bad.  Hopefully.

Overnight he was relatively stable.  This morning however, he had a three hour coughing period where he was struggling with his breathing and generally feeling (more) rubbish.  After a consultant review it was decided to do a blood-gas.  This - for those at the back not paying attention over the last nine months - analyses a blood sample for the composition of gases and provides a good indication of the lung function (over and above the numbers that he normally generates).  Yes, it's back to doing heel pricks again.  Anyway, the results were pretty poor.  In particular the level of carbon dioxide was high and the level of oxygen low comparatively.  What this means is that there is a build up of carbon dioxide in his lungs.  Which is bad, nominally the lungs should push this out as you exhale.  I use the word nominally in that we don't know what Dylan's baseline figures are so we don't know how bad the numbers are related to him rather than what they should be.

Anyway, because of this set of poor numbers, the "I" word has been mentioned: intubation.  This would also mean that he would be transferred to Bristol purely for technology reasons; Taunton doesn't provide care for incubated babies.

Four hours after the first blood-gas he had a second.  The period prior to the second test he was really pretty calm so we had hoped he would have a much better test result.  It was the same as the first.  Which isn't bad as it could be, he is clearly stable but there is concern that he's going to get worse.  So there will be another blood gas done in the morning, unless he gets into an increased level of respiratory distress.

He has returned to hourly feeds as it is felt that this will put less pressure on his lungs, but his stomach is still full of nasties that shouldn't really be there.  It may be that he will have to be food free for 24hours in order to give his guts a break.  On the plus side, he hasn't lost anymore weight which we really are quite astounded by.  His temperature has also been stable for at least 36hours.


Thursday - 29Nov12v
Strange sort of day.  He had a reasonable night although he did get more treatment than he might have done if he'd of had the same set of medics looking after him.  Either way he's progressing very slowly and this is causing some concern to the medical staff about the length of time that he can continue to struggle to breathe.  Struggle might be the wrong term, but breathing is hard work for him and has been for almost a week now.  And he's in almost 50% oxygen and not saturating which is not ideal.  Some of that is due to the junk in his lungs which may be remnants of the bonchiolitis but may be an additional (bacterial) infection.

So.  He had some physio this morning - not sure of the efficacy of it although they did extract some lovely thick mucus which has been sent off for analysis- his saturations seemed worse after they'd finished but the big change is he's now out of the box.  He's on the next level of ventilation which is called "vapourtherm".  This is a bit like the hi-flo ventilation that he was on very briefly at St Michaels.  Apparently no one knows why it works, but it does.  Essentially it's pressurised oxygen enriched air which is warm and wet.  It uses the same mask as hi-flo does.  We were dubious given that the hi-flo mask lasted about 5 minutes but so far so good.  If this doesn't do the trick then he'll be put on CPAP.  An advantage is that his level of care has increased; he's now on HDU ( high dependency unit ) so there's one nurse for both patients in HDU and they are there 24hours. A counter to this is that the Mother can't sleep next to him. This might mean she'll get some rest at last.

Other than that his temperature has remained at the right level for almost a day now and the "numbers" (heart rate, breathing rate, saturation levels) are gradually dropping.  Also this morning for the first time, his stomach was mostly empty prior to a feed which means that he's at least digesting something!  His intake of calpol and brufen have also reduced.

"No, I am not having a good time..."

Wednesday - 28Nov12
A case of one in and one out and more waiting in the wings. It's certainly the season for RSV!

Dylan has plateau'd. He's not getting particularly better, but then he's not getting any worse either.  They took an x-ray which found his lungs are full of junk.   So he's now on antibiotics.  On the plus side, he has at least grown some veins through which they can supply the drugs.

The bruised boxer
The left hand is bandaged because of the canula,
the right has a glove on it to stop him from pulling
the NG tube out and he's not wearing any clothes
because his head is in a greenhouse

Tuesday - 27Nov12
And then there were three!  Three little babies[1] all with bronchiolitis caused by RSV.  Poor things.
Dylan had a much quieter night and then decided that he wasn't having enough fun so increased his temperature to 39 degrees even after Calpol.  This means his heart rate also goes through the roof and his work of breathing again is strained.  But mostly today has been a quiet day interspersed with temperature spikes and the occasional little vomit.  Oh and when his saturations plummeted because the NHS ran out of oxygen briefly (well, at Dylan's bed space anyway).

By quiet we mean that he's still on 40% oxygen and being fed through a tube.

[1] interesting(?!) to note that all three babies weigh roughly the same amount but are of very differing ages: 7 weeks, 5 months and 9 months. The weight? About 13 pounds.


Monday - 26Nov12
Well, that was reasonably horrid.
He didn't have a great night and from about 6am through to 8pm he was awake and unimpressed with life in general.  He's currently on about 45% oxygen and is getting calpol and brufen as medication.  He's still in the greenhouse which makes it really difficult to give him a cuddle.  Even with the oxygen boost his saturation levels aren't great and his heart rate is quite tachycardic ranging between 160 and 190bpm.

RSV (Respiratory Syncytial Virus) is the cause of the bronchiolitis.  That was determined using the nose swab.  And he's not the only one suffering.  He's been moved into a room with another poorly boy with the same thing - or rather two poorly boys have been moved into a new room - although the other little lad is closer to going home than Dylan is.

On the plus side, he didn't get any worse.