Dylan Henry Jones - Month 23

Sunday - 19Jan13
We appear to be heading towards a crisis point: not only has Dylan started to develop a Somerset accent he's also dropping h's.  We're not sure about this development at all.

He's also reaching the point where he's realising that the World doesn't actually revolve around him - which is correct as I am in fact the centre of the known universe the fact the rest of the World hasn't cottoned onto it is just irksome - and this is causing some angst.  This is mostly manifest by deciding to wake at ungodly hours demanding any of milk, cuddles, bunny, dummy or all 4 which is not really going down well with either the Mother or myself.  Other than that he's doing well!


Tuesday - 31Dec13
It's been a busy month or so in which not a lot has happened as far as Dylan is concerned.  Christmas seems to start earlier and earlier each year!  You may be able to notice that he's had a haircut which is a vast improvement.  The blood pressure drugs are making a marginal difference but not significantly.  Other than that he's doing really well and seems to be mostly enjoying himself although he's occasionally extremely whingy!

Whilst more effective than Daddy's snooker ability, I think that
this approach can be considered as cheating

Dylan hopes everyone had a very merry Christmas and all the very best for 2014

Dylan Henry Jones - Month 21

Friday - 22Nov13
Well, Dylan may have done a lot of growing over the Summer but his veins are still rubbish.  The trial for his blood pressure medicine (Captopril) was a success in that it didn't affect his blood pressure too traumatically.  Not sure he'd agree that he had the best day there were screams and howls at every attempt to measure his blood pressure (every half-hour), he still hates heel pricks (which gave a poor reading) and he hates someone trying to find a vein into which a needle can be stuck (to take some blood).  Poor munchkin.  On the plus side Captopril is a nice easy medicine to give as it's liquid and doesn't need to be on an empty stomach which is even better.  Let's hope it does what it's meant to do; bring his blood pressure down to normal levels!


Wednesday - 20Nov13
Well that was reasonably painfree and rubbish!  Dylan came down with a cold last Sunday which wiped him out on Monday.  By Wednesday he still hadn't really drunk or eaten anything and was still mainlining Calpol but not quite bad enough to take to hospital.  He had his first real meal on Friday and was well enough to take away at the weekend.  And this week he's back to normal.   So the cold was rubbish because no one likes being ill and small ones can be quite hard work when they're feeling rubbish, but painfree because it only lasted a week.  That's the first of the winter colds; let's hope they're all like that!


And finally, he's admitted that the word "please" does exist and that if he uses it then he's far more likely to get his way!
  
Oh!  and he's in Daddy's good books as when he saw a still of Leigh Halfpenny (Welsh fullback) from the game at the weekend he said "rugby".

Monday - 11Nov13
Well, we're off the fortified milk and onto full-fat cows which makes life a little easier! All we need to do now is to encourage him to drink more of it and from a cup...

Dylan helping (eating) the Christmas pud

Friday - 01Nov13

Well it's been a busy time for us and we're now mired in more chaos than usual having just moved house.  Not in any rush to do that again.  Dylan has mostly taken this in his stride thankfully.  The Cat appears to be less impressed possibly because we're meant to keep him inside for a week (I think) and there's no sofa to occupy (yet).  And we're worried we're going to lose him somewhere.  Probably in a box which is where we thought we'd lost the only set of car keys...

Dylan is a parrot which is a problem when I have an attack of the gwynfor's.  It's just not possible to get the right amount of invective behind "bother" or "fiddlesticks" no matter how forcefully expressed.  He's mostly speaking single words although he does come out with comments like "more nana".  "No" is used interchangeably for yes or no.  Please and thankyou are non-existent and clearly are no where near as important as "more" or "up".  

On the health side he had his four-monthly appointment with the paediatrician which went well.  They are very impressed and pleased with his progress.  Which is all good.  On the downside he's going to need some more drugs.  We've been monitoring his blood pressure for a bit and this at the top end of acceptable levels which given that he does have a coarctation is not ideal.  So he's going to be put on something (Captopril) to reduce the pressure to more moderate levels.  This is another drug that nominally requires an empty stomach and no food for at least an hour afterwards.  Not ideal for a boy that needs feeding up! Although he's still on the charts and working his way up the centiles.  He now weighs 9.4kg.  Have I said that we really like summer?!  The reflux test that we did has shown no evidence of excessive acid in the stomach which means he's just one of those that vomits more easily than others.  Which we kind of knew, but it was worth checking.

In preparation for another winter of discontent (or time spent in hospital!), we've also been given high(er)-calorie options for his milk for when he stops eating.  He is still on his fortified milk but we're going to try and wean him off this and onto full-fat real milk over the coming month or so as the fortified milk is more designed for babies aged up to 18months.  It has clearly done it's work though.  And yes, bronchiolitis season has started.

Dylan Henry Jones - Month 20

Monday - 14Oct13

There's something wrong with this picture ...

Friday - 11Oct13
 Just some photos...

Helping Daddy clean his cyclocross bike after it got dirty racing across Dartmoor
Silly Daddy!

Exmoor in the rain.

Tuesday - 01Oct13

Some news to catch up on, holiday to France interrupted proceedings (photos from there too).  We got the final report back from the LOC (the helmet people) with before and after shots of Dylan which are below.   The numbers of note are that the cephalic ratio (width to length) has changed from 102% to 88% (78% is average, 89% is the outer boundary of "normal") and the cranial vault asymmetry (difference in length of left and right diagonals) has changed from 18mm to 1mm (less than 6mm asymmetry is considered "normal").  We're really pleased with that.

before and after
(headscan)

Sunday - 29Sep13

Quote of the week (from the Mother)

"..no Dylan, don't eat that.  You've eaten it once already"

Yes, Autumn is just about with us and to prove it you can hear Dylan's breathing across the room.  And he's still generating teeth.  What is he? a shark?!  So for the last week we've had an unhappy boy.  He's got a little worse as his coughing is improving his father's ability to cope with projectile vomiting.  Yay.

Dylan Henry Jones - Month 19

Sunday - 8th September 2013
This week we have been putting Dylan to test!
On Tuesday we started the study to find out whether he has reflux.  I think the technical term is silent reflux as most of the time he's fine, just every now and again, usually at bedtime it gets a little spectacular (last Sunday it was over Grandma and down the stairs, not ideal in a house you're trying to sell and have just had repainted. Who'd have thought blueberries could be so messy?!).  So the study essentially involves putting a tube down the nose into the stomach and monitoring the stomach contents (for acid) over a period of 24hrs.  Needless to say that Dylan wasn't wholly impressed with someone putting a tube down his nose especially when he hadn't had breakfast and it was past his morning nap time.  Good job toddlers have short memories! 

Dylan causing carnage in the kitchen completely unperturbed
by the tube up his nose and a bag around his neck

We were a little perturbed by how we were going to keep Dylan from removing said tube at the earliest opportunity and also how were going to manage with the monitoring box which wasn't small and attached to Dylan's nose by about a metre or so of tubing.  Not really long enough for a boy that likes to run around in small circles.  Somehow we managed to survive and the tube remained in with the use of socks on his hands during his naps.  I don't know how long we have to for until we get the results back.

Also on Tuesday we picked up a blood pressure monitor so that we can keep an eye on his blood pressure which has been high and is cause for a little concern amongst the cardiologists given the condition of his heart.  We haven't decided how long to monitor for (and haven't been given any guidance).  We'll probably give it back at the end of this week, numbers at the moment are still quite high which means he'll be on drugs to reduce it.

Beyond that, his vocabulary is increasing every day, and often even if he can't say it, he can point at it when asked.  And he's mastered the stairs.  Well going up them at any rate, down is an entirely different issue...

oh, and it appears he doesn't like bubble bath...



Monday - 26th August 2013
An important milestone has been reached.  Not only is Dylan 18months old, but it's also a whole 6 months since he was last in hospital!  Hurrah!  Not sure how tall he was when he came out of hospital but he's now 73cm tall.  I do know that he's grown 3cm in 4 months.  The glorious Summer that we have had has certainly helped keep him out of hospital as he's had several colds and shrugged them off reasonably well.

Safe under the high ball AND making the mark. 
Clearly an international (Welsh) full-back in the making!

Dylan Henry Jones Month 18

Monday - 12Aug13
Technological issues.  Meh. (and Yay!!).

We've acquired a few new toys over the last few days with mixed success.  We've needed to upgrade his car seat for a bit and we finally got round to sorting that out last week.  The reason for the slowness was that we wanted a rear-facing car seat which although proven to be safer for toddlers than forward-facing in an accident are a ball-ache to get hold of in this country.  A very good source of information on where to get them is here and through there we got a car seat by mail order from here (Securatot).  They were very helpful with lots of useful information and I recommend them.  The issue is that our main car is too small for a rear-facing car seat.  Or rather, it will fit but not if the person in the front passenger seat has legs.  Despite it being a (old) Focus estate.  Which is an arse.  We didn't even tried to see whether it would fit in the Mini.  So we've had to send it back and get a forward facing one.  Meh. What I suspect has happened is that since our car, all cars have got longer with more space in the backseat and whilst we will be replacing the car soon'ish, getting a car to fit the car seat is a little excessive.  On the plus side, we had to have Dylan weighed to check he was heavy enough to warrent the next size up in car seats and he's now about 9.5kg.

Our other toy was a bike seat - which we like except he's a little small for it so we have to put a cushion under him so that the straps actually hold him in.  I'll get in trouble if he bounces out whilst riding down the road.  It's an interesting experience riding with an extra 12kg on the back of the bike.  I had to upgrade the brakes as old-school caliper brakes are an "experience" in the wet* and using shifters on the downtube whilst maintaining balance with the extra weight (not helped by wriggling from the passenger) is best learnt on quiet roads.  But he seems to enjoy it and the extra load will help with the training!

 

"Dad, I'm not sure about this... I know you've just upgraded the brakes but.."

The big success however was a present from one of the newly installed Godparents.  Clearly a bubble machine is all an 18month old (and his Dad) requires!

 * and to be honest the ones that were on it were pants in the dry as well!  And no, this isn't a new bike (new to me).  I've had it for almost 10years...


Thursday - 08Aug13
 Well the big news this week is that the hat is finally off.  It seems to have exceeded everyone's expectations of how much improvement would be gained.  He's still a bit flat at the back and there's lots of lumps and bumps but not much different to anyone elses (especially his fathers which has been hit several times with an ice axe - accidently obviously.  Self-inflicted as well...).  We'll get the full scan results in a week or two and this will show the before and after scans in all their glory*

 

"you made me wear this for how long?!"

In all honesty, he doesn't appear to have noticed.  Even better he has very quickly (we think) learnt not to smack his head against the side of his crib.  Not sure I'm used to it yet.  I picked him up from school yesterday and had a brief panic when this child started to move towards me and I wondered who it was...

A day of ensuring that a small boy doesn't tread on your tail wears a cat out...

His cold went away much quicker than the Mother's.  Both are better now.  Thankfully.


* the LOC has a new funky bit of kit to generate their 3d analysis, rather than using a handheld laser scanner they use a pair of cameras (ie a stereo pair) and a turntable.  Boy gets spun (slowly) on the turntable and cameras take lots of pictures in rapid succession and these are used to build up a 3d image.  Joys of photometric stereo.  The LOC was doing some research with people I also used to do research.  We were looking at 3d facial recognition for passport control.

Dylan Henry Jones Month 17

Wednesday - 24Jul13
So, given it's the height of Summer and we've had some very hot temperatures, how come both Dylan and the Mother have stinking colds?  Dylan is possibly tolerating it more than the Mother but he is on magic pink medicine.


Wednesday - 17Jul13
He said "Daddy".
(and also "Mummy")

  
Saturday - 13Jul13
Oops.
Dylan had his first "real" accident on Thursday.  He's getting much more confident on his feet and walking much further and more stably.  Except when he gets it wrong.  In this case he stumbled and fell onto one of the garden chairs.  There was claret and the first of probably many fat lips (just about visible in the photo below).  Not sure who was more panicked: him or me!  A cuddle and some pink medicine and it was all fine although Daddy did need a stiff drink to calm his nerves...

...no really he has got a fat lip and there was blood everywhere!  Honest!

 The skateboarding is coming on much better however (the videos are rubbish unfortunately).

Oh! And almost forgot.  First words are coming out.  We've had "bubbles", "door" and "book" so far.  And in context too!  No sign of "mummy" or "daddy" yet though.


Monday - 08Jul13
 Just some photos and videos from the first hot weekend of the year.  Dylan, like his Dad, is not a sun worshipper and if ever there was a time to get air-conditioning in a car it's when you have a small child (and a grumpy Daddy) driving in the afternoon sun for three hours.  Mad dogs and Welshman...

Bubbles!!

We also think that actually he can now be considered to be able to walk as the video below (should) show.  Over the last week he's got much more stable on his feet and if anything even more demanding that he should be stood up.

He also experienced a paddling pool.  That didn't work out quite so well, but I don't think he's been put off by the experience...

Thursday - 27Jun13
I think we need to construct some fences.  Quickly.  Possibly electric ones... the monster is trying to escape

He's not walking far, but at least now more often than not he actually as his eyes open.  Which probably helps.

On a different note, whilst classical music may be thought to promote a baby's intelligence and all the rest, I can't really imagine that a Brahms Requiem is going to do much for him other than possibly scare him.  He certainly didn't look that impressed with the first half!  Maybe stick to nursery rhymes and simpler melodies for the moment...

Dylan Henry Jones - Month 16

Tuesday - 18Jun13
 Well, it was meant to be a busy day for Dylan with a hat appointment in the morning and the usual 3-monthly paediatrics meeting in the afternoon.  Unfortunately we weren't concentrating and went to the wrong city for the first.  Oops.  The second (the paediatrics appointment) went very well.  Which to be honest we were expecting.  We've seen a few people over the last month some by accident (the physio) and others by appointment (the dieticians), and all are very impressed with his progress.  He now weighs almost 19pounds (8.59kg) which means he is most definitely back on the charts although he is in danger of falling off the length chart.

Dylan not quite sure about the ice cream, but the biscuits are good

He now has 8 teeth and uses them to good effect on the destruction of defenceless bananas and biscuits (we were slightly put-out by the description "home-style ginger biscuit" in the dieticians report: I spent a good..ooh.. half an hour making those!).  Like all toddlers if he likes something he can eat an awful lot of it, if he doesn't like it then it's going on the floor.

His walking is getting closer and closer to house destruction time.  We must get round to baby-proofing the house.  And he thinks that slides are fantastic: he sits at the top with this very large grin and then shuts his eyes and giggles all the way down before demanding that it be done again.  And he is starting to get to want his own way and making it very clear his unhappiness if he doesn't get it.  There may be trouble ahead!

So at the moment we are in a very good place.  He's doing very well at the moment and doing all the right things and has been for a while.  He has been ill (with a cold) and while he was reasonably ill we didn't need to take him to hospital which is a first!  Nursery are very pleased with him and his progress too... he also seems to be enjoying his time there which makes dropping him off less traumatic.


Wednesday - 29May13
Dylan has made a very important development today.  He's learnt how to stick out his tongue.  We are immensely proud.  What's more he's also very pleased with this progress.

Dylan doing his best spaniel impression

He's not quite back to full-health: his breathing still sounds horrible, he's coughing more than he normally does and he's not eating or drinking at "normal" levels yet but he has increased in weight marginally over the last fortnight (we're talking about 100 grams) which is good given his lack of appetitie and occasional vomiting.  But having said that, it doesn't really stop him at the moment as he's spending a lot of time trying to run around (which also means Mum or Dad having to run around as he can't walk independently.  Yet) and generally causing as much carnage as possible whilst smiling very sweetly.  Same as every other little boy I would imagine!

Today we went to Bristol to see a cardiologist about pulmonary hypertension and co-arctations (again).  On the basis that Dylan doesn't end up with some horrible chest infection far worse than we've seen so far then we can forget about it.  Which is exactly what the last cardiologist said.  The co-arctation is going to be monitored.  So, yes there is a narrowing that is generating higher pressures than normal but it's not yet a problem that needs intervention.  It is anticipated that it probably will need something done at some point but what and when is up in the air.  So no real news from today other than we have a new cardiologist in Bristol with whom we have more confidence in.

Dylan "snacking" on a chunk of bread he liberated from the bread bin...

Finally, all hail to the Queen of Knitting Needles who has been making monkeys since Dylan was born and has finally finished a "batch" of 20 monkeys all in various colours and sizes and raising over £300 for CDH UK in the process.

Dylan Henry Jones - Month 15

Tuesday - 21May13
The boy is ill.  He's caught a cold.  Or rather he caught a cold at some point last week which manifested itself over the weekend.  He's mostly coping with it.  His breathing and coughing sound horrific but in between he's his usual cheery self.  Except at bathtimes which have suddenly become extremely unpopular.  Was almost expecting the neighbours to visit to find out what was making all the noise.  The only worry point is that his liquid intake is really small: yesterday he probably drank about 150ml all day and that was more than over the weekend.  He's eating the usual amounts however.

If the video works then this is the sound of Dylan's breathing and coughing.  You may need to adjust your sound levels upwards.

On the plus side his current set of teeth are making good progress: it's quite odd to see a slightly toothy smile!  And four weeks of school before his first full day off through illness is really quite remarkable we were expecting that to be much shorter.


Wednesday - 15May13
Hmm.  Clearly we're into "tooth-fortnight" or month depending on how much the tooth fairy wants us to be sleep deprived for!  We now have 8 teeth coming through which is not unsurprisngly causing a normally smiley cheery boy into a grouchbag.  He got sent home from nursery on Friday as he had a temperature: just because of the teeth coming through.  Even the mighty Calpol isn't helping!  Calprufen, ambersol, teeth granules are all used to mixed success (or is that failure??!).  Poor little munchkin.  Hopefully it'll be over soon.

On the plus side for the first time ever (I think), Dylan is now over the 0.4th centile for his weight.  And that's for his non-adjusted age.  Woohoo.  He's now at 17pounds and 6oz (7.9kg).
 

Wednesday - 08May13
All good here.  Some photos from the bank holiday weekend at my parents house where he had sand between his toes and ate ice cream on the beach.  He's also generating teeth and dribbling like a toothless.... oh.  He is... (but not for long!).  And he's a speed-freak although I'm not sure anyone's surprised by this.

"That way Daddy!"

"What do you mean there's no more cake?!"

"... you've got a moustache..."
(apologies to Hot Fuzz)

Friday - 26Apr13
I'm probably putting the jinx on us by saying this, but it's been a whole 2 months since we were last in hospital for anything other than pre-arranged appointments.  Wahoo!

"This month I think I'm this tall..."

I think he's coughing a little more than he has done, but mostly he's a happy little chappie who is eating (even savoury food), drinking water, and best of all sleeping better at night.  Except now I've said all that he'll decide not too!

Dylan Henry Jones - Month 14

Wednesday - 17Apr13

two wheels good ?

All happy here!
Six weeks since last stay in hospital which we're pleased about.  Although he starts properly at childcare as of today so we'll probably be back in hospital as of next week!  Childcare seems to be going well, he's eating more there than he does at home and they got him drinking water (how?! we've been trying for months... the little ...  ).  Dropping off a child who then starts screaming and doesn't want to let go of you is a little traumatising however.  Today, though there was a little girl who ran across to say hello to him as I came through the door so clearly he can't be having that bad a time there!

 
Tuesday - 09Apr13
Yay! The boy has put on some weight.  He now weighs about 15lb 13oz (7.2kg) that means he's put on about a pound over the last month.  Really very cool.  It now means he can at least see the bottom of the chart...  Which, as of this morning, he could also point at.

Childcare seemed to go ok (although I did return to a screaming Dylan), although I'm not sure the owner quite knows what to make of a child who didn't seem to want much lunch and doesn't drink anything other fortified milk and even then not very much.  Ah well, that is the problem of looking after him in the afternoon: he tends not to eat much.  Morning is definitely the best time.  It was quite strange being home and him not being there though.

He goes back on Thursday and Friday morning this week.

Wednesday - 03Apr13
Apologies for the lack of anything on the blog, it's been a busy couple of weeks...

So we did manage to get away for a week in the Lakes despite Dylan pretending he was ill.  He was more snuffly and coughing more than usual but with the montelucast he handled it fine.  He was less impressed with the disrupted sleep patterns and showed his discontent by keeping us awake through the night on a couple of occasions.  Thankfully we're quick learners so it only took a couple of days to twig.  He also didn't appreciate the attempt to take him up Latrigg (a low foothill of Skiddaw) in the blistering cold with a howling gale.  Frankly he's just going to have man-up next time and build some character.  And he'll enjoy it.

Freezing on Latrigg

We managed to finally get to Ronald McDonald House in Bristol as well.  We've been meaning to say hello for several months because due to the amount raised by Dylan Dad's Ride, Dylan now has a "room" which is rather splendid.  So we needed to go and see them.  They are very lovely and it is a fabulous establishment and so we are very pleased to have been able to raise such a sum of money and we will continue to support them in the future.

And, Dylan is above average in something!!  He's eyesight is ahead of average!  They check hand-eye co-ordination (if he's like a Jones, there is none), ability to view in stereo as well as checking the prescription.  He will be short-sighted of that we are confident given that both his parents have needed glasses from an early age, but currently he's ahead of the pack.  Hurrah!

And tomorrow, Dylan is going to the childcare for a few hours to see how he copes.  I'm going to go for a bike ride before it starts raining again!

"Blueberry pancakes? No I've not seen any..."

Dylan Henry Jones - Month 13

Friday - 15th March
Hmm.  Need to stop commenting that illnesses have gone.  No sooner has one died than the next one crops up.  In this case about an hour after I wrote the last post.  Dylan decided that the best course of action was to have a temperature and a breathing rate around the 90 mark followed by a screaming fit and bringing back dinner.  Rather pleased that he didn't want much to eat.  Shame about the calpol though.

On the plus side, this morning he's breathing is more normal and the temperature has gone although he does now have a cold.  We're reasonably impressed with the drugs that he's on (montelucast) as he's barely coughed all week, and the fact that he coughed twice yesterday is a note of remark to us is also very pleasant (although the fact that he's got a cold increases our stress levels!).  So we wait and see how he goes and maybe we'll go on holiday this evening.  Or tomorrow.  It'll be fine.


Thursday - 14th March
Thankfully, whatever it was that had made him unwell has at least died a death.  He stopped vomiting on Monday and his bum is now back to normal which is also a blessing!  We took him to the GPs on Monday (after 4 days) but he didn't really know what the problem was.  To be fair, we didn't expect him to.  It was probably a combination of a reaction to the vaccinations, perhaps with some other bug thrown into the mix.  He did have a sore throat which the GP did seem surprised that he wasn't complaining about.  It was a little bit of an odd illness as he was mostly a happy little boy throughout which is not what you'd expect if it was more "serious".

So he's almost back to eating normally which is good.  He's struggling with lumpy food more than he has in the past although clearly he has some sort of aberrant digestive system as he doesn't like sausages.  He does like chocolate, however.
 

Thursday - 7th March
Well, it has been over a week a since he was allowed out of hospital and he was doing very well.  He came out of hospital in much better shape than on previous episodes and that means that we've been able to get out more and generally be more sociable rather than locking oursleves away in case of further infection.  And scaring the locals with the cough.  Perhaps we could use it in an anti-smoking campaign?   It's been nice having a happy, smiley boy around the house.

We had a consultant appointment on Wednesday and she was (as usual) very pleased with him.  He has fallen further behind in his development but no more than would be expected given the amount of time spent in hospital and generally unwell.  Although he is sitting well, standing and trying to walk, he's still no closer to being able to roll over and so we do need to spend more time with him in trying to sort that out.  In terms of his overall health he's doing very well all things considered.  There is probably some further lung damage due to the infections that he's had over Winter but hopefully the effect of this will diminsh as he gets older.  There will also be a sleep study when he's back to "normal" which will look at his saturation levels overnight to make sure that there's nothing strange going on (like he's not saturating). 

The biggest issue is, no surprise, his weight which is really not ideal.  He no longer gets the benefit of a month being taken off his age as he was early and so his age\weight chart looks reasonably poor.  The 0.4th centile is looking an awfully long way up!  It is hoped that he will return to his eating habits in September where he ate everything in sight and so put some weight on.  Otherwise drastic methods may need to be taken.

Other than that, he had some more injections (vaccinations).  The nurse was struggling somewhat to find suitable spots in his thigh to stick needles as there's not much spare flesh there.  And today, he's ill again.  We're hoping that it's a side effect from the vaccinations rather than anything more serious and so will be over very soon.  What we don't need in a baby toddler we're trying to fatten up is any sort of gastro-intenstinal infection which means he's vomiting everything back up. 

Dylan pleased with another birthday present

A rather splendid Welsh dragon fleece!

Dylan Henry Jones is 1

Happy Birthday Dylan

... and after a mostly uneventful night, he came home, we only had a small party, we'll have a proper one at the weekend where he'll get the remainder of his presents.

Dylan says "thankyou for all the lovely messages, cards and presents"

Hmmm.  A small technical glitch on blogger (the hosting site) means that you'll have to wait for the video of Dylan eating his cake

Dylan Henry Jones - Month 12

Monday - 25Feb13
A strange day.  This was probably helped by the need for the Mother to be in work, the Mother's mother to look after Dylan in hospital and me to field any inquiries (from the Mother's mother and/or the hospital).  Like a very strange game of chinese whispers.  It all worked out as planned in the end but there were some "irritating" moments.
What is standard procedure for all bronchiolitic patients before they are discharged from hospital is a night without oxygen support, but monitored.  This has never happened with Dylan.  Within a few hours of him being off oxygen we have been discharged and so we were keen for Dylan to go with the protocol as although we don't want to be in hospital longer than we need to be, equally we don't want to go home if Dylan isn't quite right.  There seemed to be some resistance to this, but we got there in the end with Dylan eventually coming off oxygen at about lunchtime whilst he was having a snooze and it hasn't gone back on.  Probably a good thing as they not only switched the oxygen off, they removed the nasal prongs as well!
All being well, he should be home in the morning.  On his birthday!


Sunday - 24Feb13
Make that Tuesday morning before I can be of any help to the Mother.  The word "help" is obviously used with a large grain of salt, but present at the hospital would be a start.  Thankfully the Mother's mother is able to come across and help whilst I am persona non grata at the hospital.  She has looked after him before whilst both the Mother and myself were working.  Missing my boy though but thankful that he doesn't have what I've got.

And the boy is doing ok.  Nothing spectacular, some down some up over the weekend but the numbers at the start of the weekend are pretty much the same as at the end.  He's just started a new drug which may help - montelukast - which helps prevent the bronchioles from going into spasm.  Normally used for asthmatics there is evidence that it may help Dylan and with few side effects it is certainly worth a try.

Catching the game.  The Welsh one, obviously.  Were there any others?!

 Friday - 22Feb13
Starting with the good news, by the end of the day he was back down to 0.03 from 0.08.  Maybe the nebulisers are working or perhaps it's just time.  The nebulisers are a bit disconcerting as he had one just before his bedtime lastnight and even when he was asleep his heart rate and breathing rate were really high.  They did settle down but only after about 4 hours.  This is for a boy who needs the alarms changing on his monitors as when he's in deep sleep his heart rate can sit at about 85.  Equally the top end needs changing too as when he's in a paddy it's over 150.

We also managed to see the consultant cardiologist from Bristol who has found no heart problems to be concerned about in the near term.  So no pulmonary hypertension, no coarctation although there is a slight thickening which may need to be sorted in a few years time; we have another appointment in a year.  This outcome doesn't affect his current treatment which is simply, sit and wait for him to be off oxygen.

"Daddy, do you think these bars should be higher
now I can pull myself up on them?"

The bad news is that - assuming nothing changes - I'm not allowed back into hospital until Sunday evening as I'm ill and have been sick which is why there's a 48hr block.  Which puts extra strain on the Mother given she's been in work all week and would rather not spend the whole weekend in hospital as well.  I'm currently assuming it's from Dylan so it's probably a flu-type virus but who knows.  It doesn't feel like norovirus which is a bonus.


Thursday - 21Feb13
On the plus side, tests have shown that he's not just suffering from manflu.  Extended tests were done and other than give him a slight nose bleed have shown that there are two virus' responsible for his current stay in hospital.  These are rhinovirus and parainfluenza type 3.  This knowledge doesn't affect any treatment other than we might get moved back into a sealed room from the open ward that we got moved into on Tuesday.

Mostly a settled day interspersed with coughing fits, nebulisers and vomit.  But a better day than yesterday although none of the settings have changed.

Completely off-topic but it made me laugh after a dreadful Monday night when there was at least one attack of the "gwynfor's".  In Tuesday Times there was a little notice about bad language in rugby including the comment that Shaun Edwards (Wales defence coach) claims - despite evidence to the contrary - that he doesn't swear, he just needs to get the point across.  The Mother will not be happy with this excuse should Dylan's first words be something inappropriate and possibly profane.


Wednesday - 20Feb13
Hmm.
I think is the word of the day.  Up until midnight he was really very settled and then there were a few problems.  Partly due to sensor malfunctions, but also not a happy boy really (although due to the sensor issues it was hard to distinguish what was sensor and what was unhappy boy).  So his oxygen leveles are now up to 0.08 and that really set the tone for the rest of the day.  Unsettled.    Now at the end of the day, he has at least settled down. Still on 0.08 (ml of oxygen).  Not quite sure what the issues are as the rest of his values are fine (heart rate, temperature etc.) but his work of breathing is much greater than it was.  Hopefully this is just a blip.

The consultant who we are booked to have a cardiology appointment with in March also has appointments in Taunton so hopefully, we will be able to see him on Friday.  This may provide some indication as to why his lung function seems to be getting worse following each infection.  Until he's properly well, he won't be putting on any weight which reduces his ability to fight off further infections without additional (ie oxygen) support.


Monday - 18Feb13
It's surprising how just a small amount of oxygen can make such a difference.  He's currently being given 0.03litres of oxygen.  I don't know - nor can I find anyone to tell me - what this equates to in terms of percentages, nor the rate of supply - but it's not a great deal.  And he needs it.  Off it, he's much more quick to tire, you can see the extra effort required to breathe - he's just as cheery, but clearly not quite right.  So we expect it might take a while to wean him off that little bit of oxygen.

On the plus side, the amount of oxygen has dropped since he was brought in on Saturday.  It started at 0.05, then dropped to 0.03 this morning, then 0.02 at about lunchtime and then at about 4 he was taken off it and he didn't really like that last bit so he was put back up to 0.03.  So he is on the mend, but his lungs haven't been working "well" since probably September so it might take a while (or emigrating to somewhere with a warmer climate).  We shall see.

He still weighs less than he did on the 16th January, but he has definitely grown longer and much more wriggly...
 

Saturday - 16Feb13
It can never be a good sign when your child refuses Calpol.  Yep, you guessed it folks we're back in hospital with a poorly boy.  To paraphrase Lock, Stock and Two Smoking Barrels; Can everyone stop getting ill please? **
It's probably bronchiolitis: he's coughing more, working hard at breathing and stopped eating and drinking over a 15hr period and has also been vomiting.  And yes, we have taken him in earlier (ie he is less ill now than he was the last time) on the basis that that might make the process shorter.  Not sure that it'll turn out that way as the comments seem to be mostly "oh he's not looking as bad as last time..".  He is now on a little bit of oxygen and that has made a significant effect on him.  It's made him much more settled and means that he maintains good saturations and his breathing rate is more "normal" (under 60) although he is still working quite hard.  He's also been drinking and not throwing it back up again which again is a good sign.  So hopefully we've nipped it in the bud.  But I'm not placing any bets on that just yet.

Poorly Boy :(

 ** Should probably admit that Dylan hasn't had that many colds.  Probably less than 10.  Admittedly of these four have put him in hospital and another should have which doesn't make great statistics

 Monday - 11Feb13
My son the custard monster.  Surely that's the title of a book.  If not, it should be.  75ml of custard made with high calorie formula (he doesn't like it if made with cow's milk) is one of the few reliable foodstuffs we can get down him.  And he knows when it's custard for pudding.  Sat in his high chair with his legs kicking waiting (and usually not eating his first course either)...  


Monday - 04Feb13
We've been home a week now and progress is slow but steady.  There were a couple of moments early last week where we almost took him back in as he didn't seem to be tolerating the lack of extra oxygen.  So he's eating and drinking more, coughing less (although it's still lovely and gurgly) and more settled.

He's also learning new tricks.  He's very close to being able to stand up from sitting and is practising his sit-ups at every opportunity.

Other than that the other changes are that with great delight and glee the Mother has returned to work (last Monday) and I am now responsible for Dylan's welfare until he can go to childcare at the end of March (assuming he gains weight and remains mostly out of hospital within that time).  Not sure who's more concerned.  Dylan, myself or the Mother.

Monday - 28Jan13
...and we're out.

Dylan did help expediate matters by ripping out his ventilator tubes this morning after a rather disrupted night where he seemed to be mostly trying to cough up his remaining lung.  Sleep is over-rated and clearly for wimps.

Dylan takes matters into his own hands...

Dylan still has a horrific cough but seems to be coughing less than when we was on lo-flo.  He's also only about 8hrs off ventilation which is twice as long as he has managed in the last 8 days.  But he's certainly giving his lungs good exercise whilst the Mother-In-Law attempts to get some food into him... (the Mother is still at work, as am I).  Hopefully we can stay out of hospital for a bit.  It's a little bit tiresome.