... and a Happy New Year
It's "interesting" watching them sleep. Or not. Or sit-up moaning clutching themselves clearly upset yet not really responsive to voice or touch and then within a minute or so lie back down and be completely comatose again. In this case the wrong way round with his feet under the pillow and lying on top of the duvet. It's this sort of thing where I'd quite like some company but the Mother is still (9:45pm) at work the poor thing.
Perhaps I'm paying the price for the conversation about nightmares? But he did bring it up after watching something on television. I hope we haven't got a sleepwalker 'cos that really would scare the beejusus out of me.
Tuesday - 29Dec15
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| The saddest star |
Well I hope everyone had a wonderful Christmas and all the best for 2016
Dylan had a marvellous time (I think). We eventually got a letter off to Father Christmas - although there was some resistance at first as he wanted to send the letter to his cousins. But Father Christmas was kind and brought everything (and more) on his list. A list which admittedly started with "a balloon".
A minor concern is that he's already thinking about next Christmas and is really looking forward to his birthday. Well the unwrapping present part of it!
A minor concern is that he's already thinking about next Christmas and is really looking forward to his birthday. Well the unwrapping present part of it!
The photo on the left was from his school concert where his class\group were all going to sing. The previous day his teacher said that Dylan was very enthuasistic with his singing but on the day we arrived late (with Dylan) and I think he got a little bit flustered and ended up having cuddles from the Mother throughout the concert. He is still really enjoying the new school and seems to have settled in nicely. We shall see what happens when he goes back next week.
Daddy: "Now what word does this spell"
Dylan (reading): "b...ee...r"
Daddy: "That's right, it says no beer in here"
Dylan: "That's very sad"  |
| "I'm having cake for lunch" Mug Cakes - genius! |
Friday - 04Dec15
There were points of humour in an otherwise long and tedious day which was mostly spent either in the car or in waiting rooms. One of these was Dylan developing his superman eye-lasers to cause pain and torment to another slightly larger and quite stroppy boy who walked through the toy fire engine Dylan happened to be playing with. Needless to say said child was not reduced to a pile of ash despite the assistance of the dreaded Jones-muttering-under-your-breath curses. Can't imagine where he learnt that from, the words on the other hand are entirely from the Mother. I appreciate that there are many who may find that suprising...
It was also nice to see Dylan playing with other children. Normally Dylan would prefer to either hide or play by himself. He did initially complain that the little girl who he wanted to play with wasn't immediately co-operating. So I suggested that he ask rather than hovering expectantly. Which he did and that was fine and at one point there were three happy children racing cars around the waiting room being gently told off for being over-exuberant. But they had been waiting at least an hour by this point. Dylan did look somewhat nonplussed when I suggested that he should probably also ask what game they were playing....
Thursday - 03Dec15
On opening Day 3of his advent calendar
"I didn't know it took quite a long time to get to Christmas"
Dear Jeremy Hunt
Please can you stop *****ing up the NHS please
<sigh>
Well. That was a day. So we went to Bristol to have a discussion about MRI's, X-rays, herniation and eventration and we learnt some new words (well I did); thoracoscopy and laparotomy. And Dylan was mostly brilliant with the aid of the ipad and allegedly received no more radiation than if he'd flown to Disneyland Florida. But without the 7hr flight and vast expense. And we have two tired and grumpy parents. We also learnt that actually the MRI was - apparently - mostly unhelpful and achieved nothing more than creating smug parents. Who are then obstreporous when someone suggests x-rays as well.
The MRI takes pictures of the body in cross-sectional slices. The issues of not moving also relates to breathing; so for adult patients it may be that they are asked to hold their breath to minimise the amount of motion in the chest cavity. Obviously this would be trickier for the little ones. Movement reduces the resolution of the final image. The MRI is examined in the slices; no one creates nice pretty 3 dimensional models - at least not in paediatrics - so I'm going to acquire the images and see what I can come up with. Bristol were singularly unimpressed with our success of getting an MRI of Dylan and the planned ultrasound as expected produced nothing more than irritating the medical staff who already have us down as interfering troublemakers. We have had our cards marked.
So we - well Dylan - ended up having a lateral chest x-ray mostly because there was nowhere else to go. Should the x-ray be inconclusive then the next step is to look inside which probably carries a higher risk than the x-ray and the resultant image may be useful* and not require anything invasive. In fairness his x-ray was the most efficient, quickest x-ray that he's had. It was also not terribly helpful. It doesn't particularly show much. What does that mean? Well, none of the imaging modalities show the actual diaphragm and so can't explicitly show whether there is herniation (hole) or eventration (bulge), so what the clinicians** are looking for is the shape and the position of the bowel in the chest cavity - if the shape of the bowel is kinked then that would suggest a herniation. In Dylan it's inconclusive. The x-ray showed only that it's all a bit inconclusive. What next? In Dylan's case Bristol will perform a thoracoscopy. This is where they put a camera through the chest wall and look down on the diaphragm and see what's going on. This will be done under general anaesthetic at some point early-ish next year and will require an overnight stay. Should a hernia be found then a laparotomy will be required: this is where they open him up again from beneath the chest, pull the offending piece of bowel out of the chest cavity and then patch the hole in the diaphragm. This would require a longer stay, mostly this seems to be to make sure that everything is working properly. The bowel in particular does not appreciate being manhandled and goes into shutdown. However, the thoracoscopy may show no herniation, but it can't stress test the diaphragm, so it's strength is uncalculable. Interestingly should they need to patch the patch\diaphragm they won't be using permacol which is what they used thge first time. Nominally permacol allows tissue growth so allows the development of the diaphragm reducing the likelihood of spinal\chest deformities. But it's reasonably new and Bristol have had one patch re-herniate and then there's Dylan's issues so they'd go back to Gore-tex which is a permanent patch but - we have been assured - with no long-term health problems.
Where does that leave us? At somepoint next year we will be given an appointment to come in for Dylan's thoracoscopy. We know no more than that, it is also unclear as to how much notice we'll be given. And then of course we may well turn up only to be told that there are no beds and to go away again. For all of this the surgeon was deeply apologetic but it is the way they are being forced to operate. It is a problem of it being an elective procedure on a boy who to all intents and purposes is well and fine. And long may it remain. Should he become unwell (vomiting, serious stomach pain that can't be shifted by calpol, etc.) then we'll be going into emergency mode!
"Mummy, why does my food turn into poo?"
On an interesting note, Dylan gets very breathless easily. He can run round in circles in his room and he starts panting almost immediately. The verdict from the surgeon having looked at all the scans is that this has nothing to do with the bowel in the chest cavity - that his low tolerance to exercise is caused by something else. A topic that will no doubt be discussed at future meetings elsewhere.
"Daddy, why does a cough sound like that?"
*We were told repeatedly that Bristol would never use or request an MRI and they only use lateral chest x-rays. We didn't ask how a request for a contrast study entered the system...
**Whenever I use that term I am reminded of the book Night Sisters by John Pritchard. Not to be recommended for anyone who has to stay overnight in hospitals...
Tuesday - 24Nov15 Still. Just later than it was....
It's funny isn't it. Just knowing that there is a problem with Dylan's diaphragm makes me (I can't comment on how the Mother views is) far more nervous about his health than I was. Even though it's been there for for at least 18months which means that he's manged probably more than one winter with it... But even so. And then there's the new school which has three times (easily) as many children with all their coughs and colds. Every strange little thing - especially with his breathing - is not comforting! For example, this evening in the bath he got cold and shivery which is marginally unusual but he does have a cold and he has had a long day without a sleep and then you give him a cuddle and he's not hyperventilating, but his breathing rate is very high for someone doing nothing. Not panting or puffing just breathing really quite quickly. Which is off-putting. More so now. It's a not particularly new behaviour: uncommon but not massively unusual when he's tired. Ho hum.
Speaking of off-putting - and I'm not sure what brought this to mind - but if we'd had more accessible cash when replacing the car we'd have gone for a more modern version of what we ended up getting: an s-max. This like many new cars has a start button. All it needs is the keys near to the car and the engine can be started. Clearly the engineers who designed this function don't own a garage and curious toddlers. One can only imagine the carnage as that button is pressed by an excitable three year old. Or is it only me with an excess of years owning cars with dodgy handbrakes that leaves their car in gear at all times?
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| Dylan has suddenly discovered the joy of going downhill fast on a bike. This is not reducing the Mother's stress levels but we do now need to find lots of grassy paths as none of the bikes he fits has brakes which makes tarmac or gravel descents more "interesting" than we're prepared for... |
Tuesday - 24Nov15
Well, last week was fairly eventful. Dylan changed schools and we had an appointment with the paediatric consultant.
That meeting (with the consultant) was fairly uneventful. The drugs are working; his blood pressure is massively reduced and is where it should be although there was some concern that maybe his saturations (amount of oxygen in the blood) were not doing what they were told. He's grown (just) and put in on weight which is a relief as it means I'm not actually getting weaker... The output of the meeting is that Dylan is basically doing all the right things and generally doing very well. Although most of the meeting was taken up with the MRI result but actually this has little to do the paediatric consultant and more to do with the surgical team in Bristol. More of that later. The saturation seems to be ok as we have friends with a sats monitor and we took some extra readings over the weekend and the results are fine. The issue of the MRI is a sticking point. We are clearly troublesome parents (whilst also being extremely proud and smug about getting a 3yr old through an MRI without anaesthetic!). To recap, the MRI essentially showed that there was bowel in the left-hand chest cavity. It did not (and could not due to the scale of the "problem area" and respiratory artefact) determine whether that was due to a herniation (hole in the patch) or whether it was a weak spot / bulge in the diaphragm (patch). In any case it's probably been there for over 18 months. It appears that the Bristol surgical team whilst they may have been impressed with the fact that we got the MRI are less impressed with the fact that we have jumped the gun a bit and have been quite insistent that we need to get x-rays: if not a contrast study then at least a lateral (side view) chest x-ray. Which seems to us a trifle daft given that if an MRI can't determine what's going on how would an x-ray? However this stems from process that the Bristol team uses which starts with the x-rays and then goes onto further investigations as required and because we've jumped past this stage that appears to confuse them. Our stance is that unless an x-ray can categorically show something more than the MRI, we're going to avoid them. Unless Dylan gets ill. Like <em>really</em> ill. Next week we have a meeting with the Bristol surgical team following an ultrasound (like that's going to show anything??!) but we will at least get a chance to speak to the radiology team for their views. We shall see. And I appreciate that there is a process for organising appointments but who thinks it is sensible to plan a procedure for a child that requires no food or drink for four hours beforehand at 1130 in the morning with the warning that it might be late? We are going to have a very grumpy and possible intransigent Dylan (and understandably so). Poor little munchkin (and thank God Sony & Android for the tablet).
Mummy: "When you grow up are you going to learn how to cook like Mummy and Daddy"
Dylan: "No not really, I'm going to learn how to turn the telly on"
So we changed schools last week. Dylan being Dylan took it mostly in his stride although it probably didn't help that he was at one place all day Wednesday and then the new place on Thursday for an hour or so and then for the full day on Friday. His face was looking a little shocked on Thursday when it appeared that I was about to abandon him in an unknown environment. But he appears to have settled in ok. Although he has repeatedly said that
"I only want the friends that I've got I don't want new ones"
ie that he's missing the his friends from the first school. But we do have our first Christmas concert to go to where Dylan (and the rest of the pre-school) will be singing. I've got plenty of ear plugs!
The dinosaurs have been mostly exploring the house.
Tuesday - 03Nov15
Came downstairs this morning to find the dinosaurs had helped themselves to drink...
Dylan is - I think - enjoying the experience of having dinosaurs in the house. The cats are ignoring them.
Sunday - 01Nov15
We've got an infestation....
We don't know where they have come from, they managed to break in through the cat flap during the night. We've been taken over by dinosaurs
Yes folks, it's dinovember
(concept shamelessly stolen from Claire Slater)
Sunday - 25Oct15
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| It can't be bad when a you can eat a pie the size of your hand without comment |
I'm afraid you'll have to excuse us in this entry. This blog is not just a way to provide you with news it's also a way for us to record Dylan growing up and not missing (or forgetting) some of the moments...
Like
Dylan: "Mummy don't be mean to Daddy, you should buy him the things that he wants*"
Or carrying a sleepy Dylan into the house and wondering whether he might like to go to bed for a snooze
Dylan: "No, I think a fire and popcorn would be much more comfortable"
Which in fairness was our plan as we wanted to watch the rugby...
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| There's worse things than trolls on the bridges these days... |
Wednesday - 21Oct15
Well.
We were meant to have a paediatrics appointment yesterday but at that point they hadn't received any results from the MRI scan so we thought we'd wait. We had a phone call this evening with the results and whilst they are as we suspected the next step has put the Mother in a foul mood. So, the MRI shows that there is bowel in the chest cavity. This shouldn't be there. What is not clear to anyone (radiographers in two hospitals) is the whys and wherefores; ie is there a hole in the diaphragm or is the diaphragm weak at that point allowing the bowel to push up into the chest. Clearly having bowel in the chest cavity is not going to improve the ability for the lungs to work. Or more specifically the left lung given that's the problem area, the right one is fine. So, the surgeon has requested a lateral x-ray which while it's not as glowingly radioactive as a contrast study it is yet more radiation. Yay. Although given the number of x-rays he's had at this rate we'll be able to use him as a light source and save on the electricity. I'm sure he'd look very good on the Christmas tree rather than lights!
The Mother arrived home after boy had gone to bed and got quite irate at the thought that an x-ray was required - mostly on the basis that if an MRI didn't provide enough information why would an x-ray provide any more discriminatory information. Choice words were uttered. At volume. Whereupon a voice was heard ....
"Hello Mummy, can I have a cuddle"
Over the monitor. Ooops.
So that's where we are. Next week, I'll take Dylan to get an x-ray and the surgeon will do .... something. And separate from that we'll have a paediatrics appointment just to confirm that he is still alive. Although we do really need to get his blood pressure checked to make sure that his new medicine dose is doing the job.
To add to the excitement, our lovely childcare provider has just given us (and all the children in their care I should add just in case anyone thought we might be troublesome) a four week notice of closure.
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| Dylan with "hill bike" at Westonbirt Arboretum The "hill" bike is not to be confused with his "light" bike. The "hill" bike is for going up hills whereas the "light" bike has lights. This is clearly the correct attitude to instill to ensure full-on bike geek-ness where the number of bikes required is n+1 |
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| Map-reading with the Mother Didn't want to mention to them the map was upside down... |
Thursday - 08Oct15
Little man...
Just come back from the MRI at the hospital. Went like a dream; for the MRI, Dylan needed to stay still for about 10 minutes at a time and repeat this for a couple of times in a reasonably noisy - we both had headphones but Dylan also had ear plugs - claustrophobic environment. And he absolutely aced it. We had a little break at halfway point but only because the nurse in charge of entertainment didn't play the song at the end of the Snail and the Whale CD. During the second half I did get a little "Daddy, I've got a snotty nose" but some quick reassurance that actually nobody minded a little snot on the pillow case and he remained calm and still.
We are unbelievably proud and impressed. As were the radiologists.
We have an appointment with his paediatrician on the 20th where we should find out what was found.
On a side note. Support your local farm shop. Especially if they have loyalty cards! Whilst at Grandma and Grandpas we got a little distracted between moving car seats around, unpacking cars and getting ready to go to the Wales v Fiji game we managed to leave the keys to the car on top of the roof of another car. Which then left to go to Slough. The next day we were a little surprised to get an email from our local Somerset farm shop saying that someone had found our keys.... we hadn't realised at that point that we'd lost them. The lovely lad who found them said that there was a chance that a local shop might actually get in touch with us rather than say Tesco or Go Outdoors...
Tuesday - 06Oct15
Be careful in what you say in front of your child, it will come back to bite you and nothing is as honest as a 3 year old...
"Daddy, what are you doing because I wasn't listening when you told me"
and best of all whilst Grandpa was studying the crossword
"Oh come on Grandpa, put some effort in!"
In other news, we had a meeting with Dylan's cardiac consultant a week or so ago and it's all good news (apologies the Rugby has caused delays in anything less important, ie everything - especially as Wales have qualified...). Whilst he still has the co-arctation it is less of an issue than it was a year ago with less of the diastolic echo (ie the sound of blood when pumped through the narrowing trying to go backwards after the beat) heard last year. His blood pressure is also nicely under control and so any threats of future of surgery etc. are diminished and so we're really in a nice holding pattern where there's no real need to worry about anything. Unlike the Uruguayans as they play Fiji. Also on the plus side we're losing one of his medicines on the basis that it's probably not doing very much. Captopril, which was the first blood pressure medication he was, on didn't really appear to do very much and it's only since adding the propanolol that Dylan's blood pressure became managed. So we're going to marginally increase the dose of propanolol and drop the captopril. It's always a bonus dropping a medicine.
Speaking of medicine, never give the boy apricots. He got sent home from school with a runny bottom after eating several. Speaking of school - how did that happen? We've got the letter from the council asking us where we'd like to send him next September. He's too idge to go to school!
And finally, we're trying to see whether Dylan will handle an MRI on Thursday evening. Although a contrast study was asked for by the surgeon (to see what's going on in his lungs - whether the patch is intact), we felt that giving the boy barium (on top of all the x-rays he's already have) was possibly not in his best interest. So an MRI it is. We've done some practise of keeping still for 10 minutes whilst listening to stories, practise with ear plugs and headphones and these have gone well. The noise (of the MRI) is going to be an unknown quantity we're moderately hopeful that Dylan will handle it and we went to see the play specialist this afternoon so we could go through with Dylan what was going to happen which he seemed to get. The only minor issue is whether he's going to be tired and grumpy which means an intransigent child. We shall see. There's always bribery with chocolate.
Friday - 11Sep15
There's a Christopher Brookmyre story (Snowball's Chance in Hell) where the story revolves around the opinion that Mother's would in fact make the best spies not least for their ability to maintain a poker face at all times and even if they may be laughing inside be able to tell their children off for inappropriate behaviour....
Yeah, we failed that last one. Small boy discovered that if he put baby potatoes in his mouth they were exactly the right size and shape to then fire them across the table. Clearly this is behaviour we'd rather not encourage. But it was bloody funny. Possibly funnier by watching the Mother trying to suggest to the boy that this not the sort of thing we expected to see at dinner whilst desperately trying not to burst out laughing. I'd given up any sort of pretence at this point.
Sunday - 06Sep15
As signs go your child's consultant phoning one evening is probably never great. It's unlikely to be a courtesy call! Anyway it seems that the x-ray that was taken over the Summer and we thought was fine is perhaps less fine than we first thought. It's (apparently) not looking quite right although on the positive side it's not really changed that much since the last one which was done 18months ago. Which is also not quite right but was mostly ignored on the assumption that the gunk (in the x-ray) at the bottom of his left lung was left over crud from "Winter of Discontent".
So, there are three likely scenarios
1) There is an odd shape to the diaphragm and\or there's crud in his left lung and that's just how it is.
2) The diaphragm on the left has lost some strength and so the contents of the belly is pushing up the diaphragm. This flaccidity would also affect his lung performance on that side.
3) There's a hole in the diaphragm (dear Liza, dear Liza...)
It's unlikely to be the third scenario (in my opinion) on the basis that he's a very well boy and re-herniation tends to produce very unwell children really quite quickly. If it is option 3 then they will be opening him up again and re-patching. However, scenario 2 isn't so happy either as that may also result in the surgeons getting their scalpels out. Given his current health these would be elective procedures rather than emergency ones.
In order to get a better picture of what's going on they will do a contrast study. This involves Dylan swallowing a liquid which shows up nicely in x-rays and then a sequence of x-rays will be taken from the side (rather than the front). This will show where the stomach\gut is and provide a better understanding of what is happening. Hopefully. There is also talk of seeing whether Dylan would accept an MRI given he's a relatively sensible boy providing things are explained to him but it's still quite a large ask of him to keep still in a noisy, exciting environment. A pilot the hospital is looking to start is to do the MRI in the evening once child has been run ragged in the hope that said child will fall asleep (in the aforementioned noisy, exciting environment....)
In any case, we've been given the all clear to go on holiday next week and something will happen when we get back as regards the contrast study. Or the MRI.
Thursday - 27Aug15
"Oh go on Mummy! Let Daddy have a Landrover"
A prescient statement from boy if ever there was on as two days later we find ourselves without my car. The MOT man felt that being able to look at the rear seats through the rear wheel arch constituted "beyond economical repair". Given the car is 15 years old and has done over 200,000miles he's probably right*. But despite the boys intervention we will not be getting a Landy. Yet.
So the Summer holidays are almost over and we now have a boy who likes slides. It took several attempts at the local play castle where there is quite a big slide but I was quite surprised when we were at the zoo where they had a large inflatable slide and he insisted that he went on it. On his own. Hurrah! He also insisted on going on a Ferris wheel and loved that too. The Mother on the other hand wasn't quite as keen.
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| "Right that's that ice cream dealt with. Where's the next one Daddy?" |
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*Also for the last month it hasn't had a (working) handbrake, needed a new steering rack and a cambelt also assisted in the decision that actually enough was enough. A sad day. The Mother did her best not to give birth in that car!
