Monday - 23Jan17
Dylan: Look Daddy we've made a boat!
Daddy: Wow! That's cool, where is it going to sail to?
Dylan: Nowhere Daddy, it's not a real boat it's a leaf.
We had a similar conversation today about a rocket hed made at school.
Monday - 16Jan17
Well the lurgy is still infecting the household, and frankly after 4 weeks of Dylan hacking away it's getting rather tedious. Especially as most of the last two weeks this has been accompanied by the inevitable vomiting. In between bouts he's happy as Larry. As long as Larry doesn't run around too much and doesn't get up too early in the morning. In fact last week was particularly poor and we had pots close to hand throughout the house "just in case". Obviously we sent him to school. Although we did take him to the doctors who prescribed an antibiotic (amoxicillin) which seems to have partially done the trick. He's still coughing and vomiting; just less frequently. Which is a plus. We've also consulted with his paediatrician who has perscribed some more drugs and some Gaviscon and we've got a fairly low tolerance to getting him x-rayed to check the patch if this continues for much longer. He has complained of some abdominal pain and we'd rather the patch lasted longer than a year; it would make the surgeon unhappy if he'd managed to break the stitches this soon. He's a stoical little boy mind as these cough-vomit episodes don't particularly bother him he just carries on. Me I'd be groaning and gurgling and calling for my bed. It brings to mind a Billy Connolly sketch where he states that he had to change career from a Glaswegian docker as the lunchtime habit of 10 pints of heavy and then nonchalantly vomiting on the way back to work was not something he could achieve
Other than that, the dog and the cats have achieved a position of detente
And it's going to get busy (-ier) from the start of June.
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can you tell what it is yet?!
Not that we know either despite the number of tests and scans that we've
had and will continue to have because we are so terribly old.
All good so far. |
Sunday - 01Jan17
Happy New Year!
We had a quiet New Year's Eve with some friends and watched
the New Year roll in from the comfort of our own beds. Asleep and
oblivious to the World safe in the knowledge that a small child (there
were 3 in the house) would undoubtedly have the temerity to start
demanding attention at some ungodly hour. Which - true to form - they
did.
It's a wet and miserable day here so I thought that I'd put up some amusing anecdotes from the year. Well, we found them funny.
The Mother:
F****r!!
Dylan:
No Mummy he's not a f*****r
(the Mother's expletive was due to an oncoming car being somewhat unexpectedly cavalier in their behaviour... and actually Dylan does like the Mother driving my car 'cos the last time she took him to school she sedately spun the car 360 into a hedge. Which Dylan thought was hilarious.)
Dylan on noticing that the cars in a queue of cars haven't started moving despite the lights having changed colour...
Come on you silly cars, the light is green
I think we may have a small problem regarding tolerance to other road users when he gets older. We have no idea where this attitude comes from....
And little boy was ever so excited that someone his age was sharing his room. His friend (Holly) was up for admitting that she was tired, Dylan on the other hand...
Dylan:
I'm not tired
Holly:
Your Mummy and Daddy don't care
Hope you have a glorious 2017
Saturday - 31Dec16
Not really very much has happened since to be honest. Dylan is (still) enjoying school and riding his
bike although how much money and effort we need to place on education is questionable given he has confidently stated on one more than one occasion that he actually wants to be a hair dresser. We have no idea where that comes from.
Somewhat inevitably at the point where the school holidays started Dylan (and us) came down with the lurgy. This has meant that The Cough has returned. This is reasonably horrible. And we haven't found anything that works in calming it down; once Dylan starts he can be hacking for an hour especially in the morning. He's perfectly happy in between and had a very enjoyable Christmas playing with the cousins.
Just before Christmas we had a meeting with the paediatrician. Dylan's doing well with improved air movement in the left (damaged\broken) lung despite the cough - although I was mildly surprised to see that they had his weight as 13.2 which means he's dropped 2kg but grown a bit. Whilst our scales may not be accurate they do at least suggest that he's put on weight rather than dropped. We are confident that he's grown as I keep needing to pt the saddle up on his bike. We have borrowed a blood pressure machine from the hospital as we are going to see whether his blood pressure medicine is actually doing anything. It's meant to be weight dependent but the dose hasn't changed since he started so we're going to see if we can stop it (slowly).
In the meantime hope everyone had a very good Christmas, many thanks for the cards and presents, and wishing you all a very successful 2017. I'm sure we'll have some more news (and photos) to post soon...
Tuesday - 04Oct16
Some photos.
We're all doing fine, boy is enjoying school although he is a tired boy at the moment and so we've moved his bedtime earlier. He's also now getting pocket money and will - as soon as we've pulled our fingers out - get a newly decorated bedroom and new bed. The dog is now heavier than Dylan and has mostly settled in (to the house, with us, the cats and Dylan). And four months after work initially started we still don't have a patio: but it might be finished by November!
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| Bike cleaning. Do you think I can give this photo to Muc-Off in exchange for free product?! |
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| Daddy needs to get a mudguard so that next time he gives Dylan a tow he doesn't spray mud over him. Dylan wasn't terribly impressed by getting quite so muddy (from Daddy that is he's perfectly happy if he's getting himself muddy) but overall the trailgator has been a success. |
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| Dylan ready to go to school on his first day. I say "day", he was only there for 3hrs in the afternoon and then the next week he was there for three hours in the morning.... then it was 4hrs including lunch and then finally he was full time. Some of the uniform hasn't faired so well. It's amazing how much mess tomato sauce can make on a white polo shirt. |
Tuesday - 19Ju116
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The latest addition to the Jones household - Jumble
(although Dylan is insisting on calling her Jumbleboots or Boots for short) |
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Wednesday - 09Jul16
Dylan: "I'd like cereal please, like Mummy has"
Me: "And what does Mummy have?"
Dylan: "The same as me"
Wednesday - 29Jun16
Dylan: If I hammer a nail into my cheek it would hurt and I would say "ow"
Well he clearly has insight! I didn't dare ask why he would want to do something quite that silly.
Sunday - 19Jun16
Today Dylan learnt how to ride a pedal bike - Happy Father's Day!
After much (well some) attempt in acquiring a small Islabike for the boy we managed to get an old one on eBay which needed only minor tlc to make it rideable - altho' it does need a new saddle amongst other things. Dylan is very pleased with his latest acquisition and started riding it with little assistance from us. Hopefully as it's got a brake it'll mean we get through fewer shoes. It's still a little bit big but not quite as big as the other bikes in his stable.
He now has more bikes than me. I'm not sure I'm very happy about this...
Friday - 17Jun16 Apologies for lack of update, it's a little messy here as it's Summer so the garden has gone ballistic and we have builders in...
So, today we had a meeting with the surgeon. It was a very short meeting and one that made Dylan very happy as he's now allowed to bounce and jump around. He's been desperate to do this for the last three weeks but the Mother has been somewhat worried about the possibility of a hernia given the size of his scar. Not that that has stopped him from trying of course. He had an x-ray on the Tuesday and that's looking good and we've got another appointment next year with no need for any further x-rays, meetings etc. with her unless something goes pear-shaped. So we're roughly back to where we were with Dylan before the surgery except now he really wants to bounce and tomorrow morning if the weather holds he will be on the trampoline having already practised his star jumps and stand-to-sit on the carpet.
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Hurrah for the instructor who managed to persuade Dylan that he did
want to shoot all his arrows and he was so pleased with his efforts he had another go
later on as well. Which is splendid given after the first shot he wanted to give up. |
Tuesday - 24May16
(After Chaos has deposited his latest offering in front of him... well maybe there was a small tussle to get him to let go of it...)
Dylan: Wow! That's a big mouse
Daddy: No honey, that's a rabbit
Friday - 20May16
Well, we've been back about a week now and pretty much so far so good. He's on reasonably good form, providing he's dosed up on paracetamol although we have managed to drop his overnight dose and we're reasonably close to dropping his lunchtime dose as well. He's been to school in the morning on Wed, Thurs and Fri but this has tired him out and he's needed a sleep in the afternoon. And we're back to his normal sleep patterns: not sleeping through but requiring minimum attention (usually). And I think he's now getting the point that he needs to drink otherwise it hurts more. So today he drank more than he did yesterday which was also probably more than he'd usually drink because on Wednesday he was very uncomfortable and not a happy pickle because he was constipated (probably) and so everything hurt.
We saw his paeditrician at the start of the week and she's got nothing really to report as his development (physical and mental) are all going well and he has a cardiologist and surgeon who look after the "specialist" bits. He has a follow-up appointment in the middle of June for which Dylan will need an x-ray* to make sure that the patch is holding.
Other than that the Mother is paranoid that the wound will break creating (well it does almost go from one side of his tummy to the other) a hernia and the boy is champing at the bit to bounce and climb around. Neither of which are good for him at the moment. The problem being that it only starts hurting once he's stopped bouncing. But he's been on his bikes and been moderately active pushing the boundaries of what he's allowed to do. Which is good. And we should be able to go back to normal in another 6 or so weeks.
Other than that the need to go into hospital started me knitting again, the downside of getting out so quickly is that I'm still knitting and need at least one more ball of wool. I'm only making a scarf... altho one that doesn't appear to bend very easily.
*How many x-rays are you allowed to give a small child in any given period?
Friday - 13May16
So we're home with a whingey boy - which is to be expected - but also one who isn't sleeping through. In fact he's waking and complaining fairly regularly through the night which takes it's toll on his parents. But he is only on calpol and the occasional dose of 'brufen.
In terms of what he can and can't do essentially no boisterous running around (hmm no chance of that happening!), no trampolining or bouncing for 6-8weeks just to make sure everything settles down but he can go swimming. Other than that make sure he moves around and uses his lungs; one effect of the anaesthetic is rubbish in the bottom of the lungs and the more he uses them the more this rubbish shifts. A thought as to why he had temperature is partly due to this rubbish. Potentially if he feels up to it he could back to school next week but probably only for the mornings initially as I suspect he's going to be very tired.
Thursday - 12May16
Dylan: "Mummy, can you look at my ouchies?"
The Mother: "No. It's 4am now go back to sleep"*
We'll be home this afternoon. We would have been home yesterday but he has been running a low-grade fever and they wanted to make sure that it wasn't going to break out into something nasty. And yesterday he was mostly grumpy - definitely suffering from cabin fever and constipation. Much happier after some visitors and a big poo.
It'll be nice to be home.
*Should probably add this is not the Mother being sleep-deprived and mean, but Dylan being bored and awake...
Tuesday - 10May16
Monday - 09May16
Well, a good day for Dylan, not so good for the hospital I think would describe today.
On the good side, Dylan has been up and about and had three (very little) walks but each longer than the previous; he's been bright and active and fantasizing about food. I'm not sure whether his first meal is going to be sausage and chips with ketchup - or just the ketchup as will almost certainly happen - or crunchy bars and sweeties. Either way I think he's going to be disappointed. And he's done a poo which made everyone very excited. I was more surprised that there is poo chart and that Dylan's was some where between a Type 3 and 4 but there you go. He is also starting to absorb liquid which is also good. So we're not quite sure where the plan will go from here. Nominally the surgeon would like Dylan to have "free fluid" which is him drinking without being supplied fluids through his blood and to that end he should be tube free tomorrow morning. That is to say tubes connected to things rather than tubes removed. However, Dylan is not a big drinker at the best of times and waiting for him to take on a prescribed amount of fluid may not work even with the promise of ketchup at the end of it. So I'm hoping they may start some light food tomorrow.... as long as it's not egg as Dylan doesn't like egg and we'd all rather he didn't vomit as that would stress out his nice new (gore-tex) patch. Which really should be capitilised and have a copyright symbol next to it ...
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| Clearly the drugs do work... |
On the negative side the hospital hasn't been doing quite so well with the drugs which did make the Mother rather cross and forced her to spend the afternoon shopping for pants. So they stopped Dylan's morphine this morning which should have left him with paracetamol (IV) and tramadol when required either IV or orally depending on where he was with fluids. Unfortunately, they took off the option of giving Dylan his paracetamol IV and he took it orally at lunchtime but as his stomach isn't working it didn't get absorbed so I turned up to find a vocally unhappy little boy. Which he hadn't been up 'til now. So we got him some tramadol and he went to sleep and woke up an hour or so later much happier. It didn't help that last night there had been an error and his fluids and paracetamol hadn't been prescribed and the only doctor was in a&e and wasn't able to sign. It got to the point where the Mother was willing to run to a&e with bit of paper to sign if that was going to speed up the process. But we got there in the end.
Sunday - 08May16
Well, that was interesting. My turn to stay overnight with Dylan. And in fairness it could have been a lot worse. He didn't actively try and remove anything too important although at one point at some godawful hour in the morning he had a coughing fit and it did appear to me in my comatose state that he was pulling up his ng tube through his mouth rather than out of his nose. Thankfully he wasn't but it did wake me up quite quickly. He did however spike his temperature quite successfully and so they took some blood (culture) which will tell whether he's got an infection in a few days. They took some more blood this morning for some different tests and the results weren't great. I don't really understand what this second test shows other than being told that the number at the end wasn't great and if he was an adult he really would be quite poorly. As it is he's a lot better than he was. Any boy who can blow raspberries is clearly on the mend and we've had a fair few smirks and more words and generally he's been a lot brighter today. This is all good.
But we are in a waiting game. And we're waiting for Dylan to fart. Telling that to a small boy is a sure fire way to get a grin. That will tell us whether his bowels are working at which point we can see whether he can eat. And he wants to eat something. But he needs to drink and to move. He's getting there slowly. The downside is that he's getting fluid into his system through the neck line so doesn't actually need to drink other than for comfort (and to stop him ripping bits of dried skin off his lips - which he has worked out hurts a lot but not enough to only do it once) and this isn't something he really does. The ng tube is causing some discomfort and we had a small vomit this afternoon. However the ng tube does provide information as to what's going on in the stomach and the bowels and at the moment the bowels are not working as they should - stomach contents are a lovely green colour which is bad. Dylan's getting quite a lot of intermittant discomfort which could be spasms in the bowels. Which brings us on to drugs; when the morphine stops as sadly it will he may be given Tramadol in it's place. Both Tramadol and morphine can act as a constipating agent. Tramadol can also make patients sick and typically they use an anti-emetic called ondansetron which is also a constipating agent. Now, ideally we don't want him to either cough or throw up as we'd like the tissues to sort themselves out (heal) first before stressing them out. But equally getting the bowel to work whilst constipated is not going to be a pleasant experience.... We shall see. But it's been nice to get a little bit of the Dylan we know and love back today
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| Playing grumpy for the camera. Well kind of... |
Friday - 06May16
We're in the honeymoon period. Probably?
Boy is doing well, he's moving ok and wants to sit up (he also wants to drink something but he's nil by mouth until late Saturday at the earliest). He's also bored and grumpy but manageing fine on the painkillers he's been given and hasn't needed much "extra" morphine. Neither has he removed any tubes. So, so far so good and we'll see how we get on when they start re-introducing drink and then food (here's hoping his bowels work) and then reduce amount of pain killers.
The Mother on the other hand is beyond narked. Someone ate her - clearly labelled - treats in the communal kitchen. And after that she Facebook wouldn't let her post a rant. Interrogations were almost carried out amongst the parents on the ward.... Stressed? No not at all
Thursday 05May16 (just) So, we made it into hospital (just) despite the M5* and Dylan was very good despite the length of time between breakfast and anaesthetic. Last food was at 730am, last drink at 1130, anaesthetic at 3pm. Thankfully he fell asleep for the last hour or so otherwise we'd of had to cope with an extremely grumpy boy. As it was he made friends with the nurses and doctors by mostly being helpful in taking his temperature, putting on his sats monitor....
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Pre-surgery photo op. Showing off the nice surgical gown and Fearless the Dragon
who's the pre-school support team. Not sure why he's grumpy 'cos at this point he was
having quite a lot of fun |
Having signed the scary consent form which included warnings of blood loss (lots), organ damage (spleen and liver), death, etc. we left him unconcious for the surgeons and waited.
One meal in town, some faffing and two rows of (knitting) stitches (82) later - or about 3 and a half hours - the surgeon comes for a chat. They are happy. The original patch hadn't broken, but the stiches surrounding it in one part had. There were issues with adhesions (where tissues have been cut and repaired; layers of tissue can become stuck together) but less than worst fears. The spleen and liver were reasonably well stuck to the tissues but not damaged although the spleen does have a bits of the old patch now attached to it. A new Gore-tex patch has been put in place over some remaining parts of the old patch, new muscle and ... well not very much it sounds like... essentially whatever they could attach it to on his ribcage. In the end they had to do very little manhandling of the small intestine which is a bonus as it doesn't appreciate this and stops working.
So at the moment, he's nil by mouth for at least 48hrs so that his system can recover from being manhandled. He's on oxygen at the moment but probably only because he's post-aneasthetic. He's got a few more holes in him for arterial access and also an ng tube which is for liquid coming out of the stomach rather than anything going in but in any case I predict will he'll remove as soon as he's awake. And he's dosed up with painkillers (morpine) with more options as back-up if that's not enough. We had suggested that this was patient led (Dylan presses a button, he gets drugs) but it's actually ended up being nurse led.
....Nope brain's gone blank. Sure there's more but can't remember what.
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Post-surgery. His scar has got bigger... And I'm not sure why Bunny is wearing pants
I suspect when he wakes up he's going to be really grumpy. Justifiably. |
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| A happier day - unpaid product testing for muddy puddles |
*some muppet with a caravan decided it looked better upside down giving us a more stressful journey in than bargained for when we thought we might be late....
Thursday 05May16
Dylan: "It's not fair: I'm bored and I've got nothing to do"
The Mother restrained from screaming "it's 9:30 at night go to f******* sleep!"
We are going to hospital today, there is a bed for Dylan, surgery should start by 1pm (ish) this afternoon and I'll update the situation as and when. All we have to do now is keep cheerful a small boy who won't have eaten since 7:30. I know I'd be pretty damn grumpy...
Tuesday 26Apr16
We went to Bristol today to see the play specialist and for Dylan to see the hospital, where he's going to be staying and what the anaesthetist will do. He seemed to take it in his stride and our biggest concern is that if the anaesthetic is through a canula - or in fact if there is a canula and stuff to inject - he will want to operate the syringe. The need to explain the surgery didn't really come up as he'll be unconcious and so he knows he'll get another scar and there'll be some bandages. We will have to cover why he'll be feeling like cr&p afterwards at some point but he seems happy that there are toys, books and pretty lights.
Daddy: It's not amn't it's aren't
Dylan: Mummy, I aren't....
Daddy: <sighs>
Mummy: <rolls around on the floor laughing>
We also had our first parents evening. No real surprises as the boy loves his school but useful so that we know what's planned for introducing the beasts to big school and when that might be so that we can try and include Dylan even if he's not back at school properly.
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| Learning an important skill |
Wednesday - 20Apr16
"Nurses don't fix people. Doctors do that. Nurses put broken people back together..."
Well, Dylan my lad, you're going to (hopefully) find that out in a fortnight. The official letter arrived today with all the details. Ho hum. It's great that the paperwork has caught up which provides re-assurance that it's going to happen. But, it's going to happen. Which is important and needs to be done and carries only the risk associated with any surgery; there is no additional risk due to the procedure. And it's scaring the living crap out of me and I wish it didn't have to happen. On the plus side for a number of reasons (trying to sell the cottage again, building work etc etc) it's sufficiently manic for me to forget about it for the moment. Until someone sends us a letter regarding the surgery.
Meanwhile at school they were talking about hospitals today - which was somewhat prompted by us - and next week we're going to Bristol to meet the play specialist there so that we can talk to Dylan about what's going to happen. I'm not quite sure how to explain it to him; apparently the best way is to keep it to the what rather than the why and don't start talking about internal organs as it might give them nightmares. At least for now.
In other news Dylan has got into the local primary school (the one he goes to now as pre-school) and can even get the bus to school. Not sure I could face putting him on the bus - in his uniform - on the first day of school. As one of the other mothers at pre-school said, they seem too little to be going to school in September.
Tuesday - 12Apr16
As we all know from Spiderman "with great power comes great responsibility". And Dylan has "the power". In this case to get absolutely anything out of the Mother. He has worked out that if he strolls up and gives her a little kiss or just says "I love you mummy" he can pretty much get what he wants. Thankfully at the moment this usually amounts to little more than a hot chocolate and\or an ice cream. I, on the other hand, get the occasional grudging "I like you Daddy". Which gets him nothing...
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| This one is powerful... |
In other news, we have a date for surgery. Nominally it's on the 5th May. We shall see. It would be remarkably convenient if it was, as that's within the dates of the Mother's annual leave and if it was at another point in time then she would have to take unpaid leave. My scepticism in it actually being on that date is based around the schedulars (for all surgical appointments) saying it was likely to be during Winter at the earliest and then the surgeon phoning up the Mother on Monday to say she had put it in her diary for the 5th and what did the schedulars know anyway. Of course it does all depend on there being available beds, blah blah blah. I love the NHS dearly but the impression being given is that Bristol is having "issues". But then aren't all NHS services. Having never really needed to use the NHS ever maybe it's always been like this. I digress. It does appear that our merely asking for surgery within a particular window has us marked down as troublemakers...
So what's likely to happen? Well, they're going to open him up - probably through his existing scar - cut through all the scar tissue that will have built up, carefully manhandle the bowel out of the way and put a new patch in. The size of that patch will probably depend on what they find when they get there - as will what they attach it too. Will it need to be the ribs or will there be part diaphragm. Then sew him up and wait to see if his bowels move! We know people who have been here before with their little boy who at 18months reherniated and the surgery took 8hrs, then in hospital for a week and then at home for a further 3 weeks before going back to playgroup. We're expecting something similar. There is no expectation that Dylan will need to be in ITU following surgery.
All we have to do now is prepare Dylan for what's about to happen (and equally if it doesn't). We've talked a little bit about it to him as he's seen the photos of him post-surgery (aged 1wk) and asked what the red line was. We're hoping the play specialist at Bristol will be able to help with this but initial contact suggests overwork and that preparing him before the day may not be possible. We shall see. We just need to remain positive and to not make a big thing out of it and if it happens that's fine and if it doesn't we'll go to the zoo.
Wednesday - 02Mar16
Well. That was certainly definitive.
The man from the John Radcliffe Hospital in Oxford he say "what's the discussion here? it's a re-herniation pure and simple". Or thereabouts.
To recap, the discussion (and decision on what to do next) stems from Bristol (and Taunton) trying to work out why there is bowel in the left-side of Dylan's chest; is this through re-herniation - a hole in the diaphragm - or an eventration - a bulge in the diaphragm. If the former then you need to patch it, if the latter then you should probably have a closer look before you decide whether or not to patch it.
The man from Oxford he says - and it makes sense - that it can't be an eventration because it's on a patch. If the diaphragm was muscle then eventration could have been a possibility. But it's not, so it's not. There is some surprise that he's not symptomatic (ie very ill) but in all probability he's probably about right for someone who's using 1 and a half lungs and using the "wrong" muscles to breathe with on the left side. And the hole has been there since September 2013 at least.
And the MRI was very useful (or so they said) and the Mother could be
smug at people by telling them how her son got through an MRI without
anaesthetic aged 3 and a half!
What next? Well, at some point Dylan will have elective surgery - that is to say we'll elect to put him in for surgery he doesn't get a say in the matter - to re-patch the hole. We did get some interesting statistics such as between 10 and 20% chance of re-herniation for diaphragmatic patches with some research suggesting as high as 40%. It also appears that Dylan has a very large stomach - surprising given the amount he puts in and the amount that comes out the other end but there you go. Given that he's not regularly vomiting or struggling to swallow there doesn't seem too much concern about this now (from Oxford). All I have to do is to remove the nightmare scenarios from my head because they are unlikely and they're not helping. Besides I quite like having the boy around even when he's being a pain in the posterior.
Tuesday - 01Mar16
"Man-eating monsters don't live in the sea. They live in the attic and then at night they climb up the drainpipes"
Should we be worried??
