Cracked Pot

This afternoon we all bumbled off to Hospital, with me silently dreading One Discharge: No Appeal. That… didn’t happen.

Totally didn’t happen.

Our consultant Paed was drowning in work and had subbed out half his clinic to a locum consultant: the delightfully named Dr Pal. And she was very, very nice. Harry was already in full melt-down by the time we got into the exam room, and had already thrown himself about the waiting room in a frenzy, putting two fresh lumps on the back of his head and another bruise DIRECTLY ON TOP OF his existing shiner.

Incidentally, is that purely a UK colloquialism? A black eye! Here, have another photo, with this morning’s bloody lip featured for good measure (fell off the padded piano stool straight onto the exceedingly UNpadded square wooden stool that he insisted go there, in defiance of safety. I moved it twice and he went bananas and hit me both times so eventually I just let him leave it where it was. Whereupon he promptly crash-landed on it the moment my back was turned.) along with the crusted snot, neither of which he would permit me to wipe.

Harry bruised

Where am I? Oh, yes. The toy box in the corner distracted Harry sufficiently (and he fell over on the way across the room! For no reason! She noticed! Hooray!) for me to give a very truncated precis, and I had just told her that Harry’s behaviour had me in tears most days, when the toys lost their appeal and his hysterical shrieks started up again. He threw a toy car across the room like a rocket, and I’m pretty sure the Dr shifted on her chair ready to take cover behind the desk at that point, because it was blatantly obvious that he was planning more missiles just as soon as he could grab something else. He calmed down briefly when shown some lego, but soon decided that it would look much better embedded in Daddy’s eyeball. John eventually just had to sit and hang on to him for grim life in a sterling effort to stop him dashing his own brains out, and the next 10 minutes of our conversation were surely audible along the corridor because we were HAVING TO SHOUT to be heard.

After this, John decided that enough was enough and carted Harry outside in search of somewhere softer; there was a wincingly near-miss with the doorframe when Harry violently threw his upper body backwards the instant John loosed one hand to turn the doorhandle (a scenario that has drawn blood from Harry on more than one previous occasion) followed by the sounds of hoarse screams fading slowly down the corridor.

Dr Pal said …well, a lot, really. I loved her from the moment she asked me – without a trace of irony – ‘If I had a medical background? No? You understand the clinical issues unusually well’. I glared at John like a Medusa, and I hope he knew that if he had even so much as shaped his lips into anything that looked like the first syllable of ‘Internet’ or ‘Google’ then he wouldn’t have lived to see tomorrow’s dawn. I fell in girly love with her a little more when she said ‘I can see you’re going through hell. This is certainly extremely challenging behaviour.’

My lip immediately started to quiver (as it naturally does when you’ve been feeling all along that you are a teeny bit entitled to feel sorry for yourself but no-one is actually Seriously Getting It apart from you and your innernet buddies, so you haven’t really felt fully justified in wallowing in a mudbath of Waaaah! and you’ve been quietly keeping a lid on things, rather) and my inner Stiff Upper British Lipness (whom I picture as a particularly well-moustachioed Sergeant Major) was obliged to roar at me imperiously; something along the lines of GET A FUCKING GRIP ALREADY! followed by DON’T YOU DARE WASTE TIME BLUBBING JUST BECAUSE YOU’VE HAD A SMIDGEON OF SYMPATHY! and JUST BECAUSE THERE’S A CHANCE THAT SOMEONE WHO CAN DO SOMETHING ACTUALLY AND FINALLY UNDERSTANDS! It was a toughie, but Sergeant Major won, and I retained the holey and cleanliness-compromised emotional cloak that I term my dignity.

She listened to the lot: trainwreck pregnancy, premature birth, neurological worries, mobility problems that no-one can see except the people that, like, actually know him, his near-complete absence of speech, his sensory quirks and oddities, and his dreadful, dreadful behaviour and how it does – and does not – manifest itself. She listened with amusement as I dryly described alarming our regular Paed with my proffered diagnosis of mild ataxic cerebral palsy.

And then she told me – and it’s still ringing round my head – ‘Your fears are valid.’  

She is taking this seriously. Someone is finally taking Harry seriously. This is the first time that I’ve genuinely known that someone isn’t blowing smoke up my arse.

The first thing she has done is fax an urgent referral to the community paediatric psychologists. She explained that there are painfully few – read, no – magic wands they can wave, but they can certainly help support and advise us in our management of Harry’s anger and frustration, whatever its cause. Which would be balm, because John and I are certainly not singing off the same Tantrum Management hymn sheet currently.

And then there’s finding out the cause. She courteously deferred to our regular Paed’s final say-so, but she has provisionally referred Harry for an EEG and an MRI scan.

That’s the whole nine yards.

General anaesthesia.

Brain scan.

Shit.

She explained that our regular chap may want Harry’s psychology results before he oks it, and suddenly I felt extremely grateful that Harry’s Paed is a very cautious chap who probably thinks there’s not much wrong with him. I hope he’s right.

Despite the fact that I’ve been jumping up and down and squeaking earnestly about brain damage (to any medical professional who’ll stand still long enough to listen) for the last couple of years, I’d kind of got used to being considered this paranoid and eccentric crackpot mother who has a bee in her bloody bonnet.

I’d scooched out a comfy little place to sit, and the view from here is… sort of alright, you know? Suspecting but not knowing.

The next step towards knowing actually involves shoving needles and drips in my struggling little boy, filling his veins with cold, potentially deadly drugs that course their way into his tiny, brave little heart (only a few months healed of its hole) and head, temporarily shutting down the vibrant, vigorous, energised, enquiring, affectionate, beauteous personality that is my son and rendering him limp, absent, forlorn. Unreachable in his darkness. Alone. Unmothered. 

All anaesthesia carries a risk, and Harry’s middle name has never been Lucky. If he didn’t wake up, I don’t think I would watch another sunrise, either.

John’s gone quiet; he’s not keen on the idea. We have to ask ourselves – and them, at length – what the possible benefits of having a clearer picture of Harry’s clinical diagnosis are. It’s not an absolute: people with very obvious neurological impairment can appear undamaged on MRI. The brain is an unimaginably complex piece of kit and, even if we establish that Harry does have damage, and the nature of it, I’m not too clear yet about how that understanding will help us improve his function. So many questions.

Tonight, I really miss being the crackpot mother. I think it rather suited me.

Advertisements

32 Responses

  1. I always read. I never comment. Don’t know what to say that doesn’t sound like patronising drivel and I really only have a tiny inkling of what you’re going through, and that seems bad enough.

    My heart aches for you. I think you are very brave and very lovely and that you will absolutely do what’s best for him, as you always do.xxx

    • My dear, you’ve cheered me up today no end already: your flat use of the word ‘bumhole’. I like! Must use myself! So… delightfully expressive!

  2. For what it’s worth, I knew you weren’t a crackpot all along. It’s the thing you want to hear most until someone with some authority sacs up and says it, and then it becomes the thing you least wanted to hear, and it sucks, and I’m so very bloody sorry. And relieved.

    My two cents on the diagnostic stuff: it’s a necessary evil that is scary as hell to contemplate, let alone act on. I can argue both sides of the risk/benefit ratio with a fair amount of bluster, but what ultimately sways me when it comes to these things with my kids is that at the end of the day you need the hard data in order to get the right services in the long run.

    Also, midazolam (versed), in syrup form (some places even have lollies) is wonderful stuff and you need to demand it. Get your consultant friend to help you pull the right strings; you give the child a dose of that (and usually the staff have enough sense to assess the child’s demeanor and hand the syringe or cup to you, step back, and let YOU present the child with it) and over the course of about five minutes they get giggly, then wobbly, then sleepy, and finally even the most previously difficult or terrified pre-verbal child in the world will cheerfully allow anyone in the world to carry them off for the rest of it. I’ve had anesthesiologists use that stuff on multiple children on multiple occasions and in one case got them to let me stay with a three-year-old until he was fully anesthetized after promising and swearing not to faint, cry, or have hysterics. He watched and SMILED while they inserted the cannula for the IV anesthetic. Even giggled drunkenly. It was a bit unnerving for me but he wasn’t bothered at all, and I am talking about a child who has had enough medical interventions that he goes into full-blown hysterics the moment he sees people in scrubs come at him.

    • Dear God, I need some of these wonder-potion lollies for myself! Will chat to R about paediatric knockings-out tomorrow, thanks for the Versed name check!

  3. It sounds to me as if you’ve got slightly more solid material to work with now because the medics are taking you seriously. (At last – oh my dear…).

    There is a difference between choosing to live with ambiguity for a while and being forced to live with uncertainty. The first can be surprisingly ok, because it is something that you choose to do. The latter is awful, because you have no choice. Choosing to live with ambiguity for a while is an entirely valid choice.

    The nub of it is, what difference would knowing make? If the information that an MRI gives you will make a difference, then factor that difference in and make the choice based on that. If knowing just rules out certain things, then ask your self if it is worth it. (And you are asking yourself that already).

    It’s not a once-and-for-all decision. It is one that you can put off. Or one you can decide “we’ll do that if x or y or z happens”.

    Email me if you want to.

  4. Damn it, lady, you have me laughing and crying and aching all at once. And that picture makes me want to volunteer to get beaned with a flying toy car myself — to take some of the weight off Harry, and to give you a break from taking it on the noggin yourself.

  5. “at the end of the day you need the hard data in order to get the right services in the long run”

    exactly the point I was going to make, but much better worded.

    Dee has had general anesthesia three times (three eye surgeries) and it sucked but ultimately was fine. I insisted on remaining in the operating room until she was under. You just have to convince the anesthesiologist that you will remain calm, and that you plus the kid is going to be easier than the kid alone.

    I am so glad you have someone taking you seriously. Best of luck with the next few weeks.

  6. You know what I do for a living. My other half is an anaesthetist.

    If the fear of GA is part of it, on behalf of both of us I entreat not to do so. Unless the UK is markedly different to here.

    xx

    g

  7. It’s always nice to be taken seriously. I hope the psychologists can give you some tips to help you and John get on the same page. Because dealing with a difficult child along with an adult who doesn’t agree with you is enough to make you pull your hair out.

    Harry is a very lucky boy to have such a persistent mother. He will definitely benefit from having you on his side.

  8. I cried about the sunrise part, hell I cried through most of it.

    I feel for you babe, it much be relentless and emotionally draining. I always work on the basis of ‘the path of least regret’ that tends to get me through. Oh and gut instinct, that tends to be damn near spot on too and it sounds like you have that in abundance.

    You can hold Harry’s hand through whatever path you choose and we’ll hold yours.

  9. I am glad that you have finally seen someone who takes you seriouslty and that Harry did his bit by showing her the things you have been concerned about. It is never nice to hear that your fears have foundation but you know you need access to the help Harry needs and sometimes as this others have said you just cant get it until this happens. I just wish it wasn’t so and the bloody randomness of the world had not left you in this position.

    On the diagnostic tests – are they going to change what they decide to do for him? If they aren’t maybe you don’t need to get them yet. Or if they will rule out certain things then maybe the answer is to do them now. It comes down to one’s appetite for uncertainty. I know I’m not good with it so I would be for the tests. Whilst GAs are scary to think of Z has had two (albeit when a baby not a toddler) and they were really not too bad at all. The Paed anesthetists were both lovely – you know the sorts who call you at home post the op to check he was ok. Ditto the nurse play specialists who were with him when the lines etc were put in and blood was taken. I was the one in conniptions not him. One shock though was that pain relief post the ops at GOSH was paracetamol and ibuprofen only when I was expecting a bigger gun or two.

  10. You are so coherent, so full of self-awareness, so rational, so emotional. And yes, I know so well that feeling of needing a badge that says “please don’t be too nice to me, or I’ll cry, just be horrid to me, or at least professionally distant, and then I can hold it all together”. Do they make badges like that?

    Don’t put him through lots of tests unless it’s going to help decision making. What’s the point? It’s not just the anaesthesia. It’s the whole question of what you’re going to do with the info afterwards. I think the whole scan thing is a bit out of control these days – they find things that look abnormal, and then say ‘but we’re all full of abnormalities and we can’t tell whether this is a problem abnormality or just your own unique abnormality’. But you’re already onto that…

    I’m glad you blog.

  11. The intellectual part of me says that GA is very safe and well-regulated today but I know if I were facing the same decision I would feel at least some of the same concerns. (I do agree with Ben Warsop, you are his mother whether Harry’s awake or not. And his experience, once he’s down, would probably be relatively benign. But, even knowing that, I would be wrenched to think about doing it, too.)

    I do agree with your and other commentary that the question of what benefits can be derived from the test results is very important.

    A day after first reading this post I’m still thinking about it–how it was random chance that you got this “second opinion,” how utterly different it was from your regular Paed’s thinking, and your commentary on the perils of getting what you wish for (i.e. to be taken seriously). No easy answers here, not a one, and I ache for all the uncertainties in front of you. I wonder, should you get a diagnosis some day, will it be easier in part if you at least have a name and a shape to the things that you’ve wondered about for so long? Oh, probably not …

    On a lighter linguistic note–we definitely use “shiner” on this side of the pond! If you had asked me I would have guessed it to be of American origin, but then again, you Brits always have the best slang.

  12. Or rather, definitely not. Maybe it’s just that the specifics of what’s difficult shift places.

  13. Scant satisfaction in being right, in these cases, I know. And I hate it when the doctors don’t agree. What is a person supposed to think?

    You’ll work it out, I know you will, and you’ll be right.
    I have great faith in you.

  14. I don’t know the answer regarding the testing or not (i know, incredible for once I’m not about to launch into ill-informed advice). But what trikes me is that it must have been incredibly lonely without anyone taking you seriously, now at least regardless of whether you get a ‘proper’ diagnosis hopefully the medical professionals will give you referrals you need.

    Best of luck.

  15. If I learned anything from my brief exposure to neuroscience, neuropsychology et al., it’s that the brain is a many splendour’d thing. And while we know a reasonable amount about which parts are involved with which functions, there’s an awful lot we don’t know. And some of the stuff we think we know is really our best guess.

    My only advice would be to arm yourself with as much reliable information as you can stand (the risks of G.A. in toddlers, the likelihood of something relevant showing up on an MRI, the clinical benefits of EEG when combined with MRI as opposed to MRI alone, along with what the paed. psychologists say), and then go with your gut. You’re his parents.

  16. you haven’t really felt fully justified in wallowing in a mudbath of Waaaah!

    Oh, dear one, you are SO justified. What you’re enduring is terribly, terribly hard. One chink in the armor, e.g., someone taking you seriously, respecting YOUR hard-won knowledge, would of course bring on the sobbies.

    I’m a little relieved that they suggested scans – my boy was under general anesthesia for ear tube placement last year, and while it was scary for me, he could’ve given a damn – and hope they can find something that will direct future therapy. Either way, I’m about ready to buy Dr. Pal dinner and paint her house. Thoughts to you, sweetie.

  17. A good friend of mine just had to bring her son (aged 4 years, so much bigger than Harry but still small nonetheless) to the hospital for a kidney scan with dye. Watching him lie there, so still, was very hard for her but Wy did wake up right after the scan. They had calculated his dosage very carefully so that he was out not a moment longer than he had to be. If it comes to scanning, I am sure they will do the same for Harry.

    My dear, if anyone deserves to wallow, it is you. You have been going through so much for so long that I can hardly fathom how you are still standing. I am so glad that someone is FINALLY taking your concerns seriously and actually taking concrete ACTION. I’m hoping and praying that in a year from now you can look back and say that this was the catalyst for change and how much better things are. I’m standing with you.

    XOXOXOXOX
    Flicka

  18. I guess I’m glad he’s getting the investigations – but the scans are bound to be scary for you. I have a feeling though that they use sedation, not general anasthaesia, for kids’ scans – same general effect, an awful lot less dangerous.

    • Yes! R explained sedation vs general anesthesia IN DETAIL to me some years ago when I had IVF sedation, with, like, drug names and everything… but my brain… it sucks. I can still remember the date of Henry VIII’s accession though. But yes, it appears that I heard ‘sedation’ and thought ‘GA’, when it’s not the case. Panic level duly downgraded!

  19. AnAesthesia! Anaesthesia! I’ve been reading too many American blogs, obviously! They are cruel to their Us and As out there, CRUEL.

  20. Sedation will certainly be better than general anesthetic (anaesthetic, for you) although still not welcome, but I recently had a brain MRI, and I do not think a toddler could withstand it. Lots of noise, lots of keeping still. Perfectly tolerable for old jaded me, but not at all the thing for a child.
    Do you read the blog “Flotsam”? Alexa faces the likelihood of unsedated procedures for her Simone, and makes the worry sound funny on the surface.
    American spelling may make you shiver, but Americans love British spelling and British voices, although some confusion continues. My British son-in-law was asked to address the Girl Scout (I know, Girl Guides!) group on Australia, but politely demurred as he was not in fact Australian himself.
    I wish you all the best and that the tests, if necessary to solve mysteries, turn out to be as easy as possible.

  21. As usual I am a bit late to the discussion, and my advice may be suspect being based solely on my personal experience. I get conscious sedation about 9 times a year due to the need for radio frequency ablation that I do to help treat my EDS complications and I do not use the Versed (just my choice, but I recommend it for Harry). I wake up quickly, go to sleep quickly and seem to have no ill effects.
    My oldest daughter use to dislocate certain joints when she was very little, right before her Ehlers-Danlos was diagnosed and they would not go back into the socket so we would have to carry her to the ER where they would sedate her and place her joints back into alignment. This often took up to an hour as the muscles relaxed and she always did very well under sedation. It started when she was around three and was quite frequent for a while.
    It is of course very scary to see my child without her usual animated personality, and the risk, but not being able to walk because her knee was wonky again, and had been for 3 hours; there really was no choice. I think that was the hardest, but knowing that she was getting what she needed and that I was right there, those were the tangible trade offs that I could use to comfort myself when I started to lose confidence in what I was doing.
    That did lead us to find a diagnosis, so it was a catalyst, perhaps Harry’s scan will be as well for the medical community.
    You know medical people, they like things that are concrete, brain scans that they can look at so that they can put names to things or joints that don’t behave as they should on an xray. These things they can see all the time on their computer and pull up from the chart at will as opposed to a your little boy who falls some of the time (and is at home) or my bendy little children. If they don’t have these things then they seem to be very stingy with their diagnosis and their plans and their money, at least that is what I found. It is all hard science with them.
    This new doctor sounds like a lovely woman and I am so glad that you finally have someone with a medical degree really listening to you and really assessing Harry. She sounds as if she really looked at Harry and listened to you and understood. I am just so sorry that she did not come into your life sooner.

  22. Yeah. That amazing moment of triumph when someone medical finally GETS it and wants to do Big Sensible Things about It (whatever It is), and you are not alone and not imagining things and not a crack-pot. It’s so quickly swamped in a tidal wave of OH SHIT. Because, really, wouldn’t it be infinitely lovelier to be a crack-pot mother with a perfectly normal child instead?

    Oh, Ann. It’s heart-breaking. Hugs.

    The psychology results will be interesting and important, I think. Important for you to know what is tiresome-but-normal toddler nonsense and what is actually An Issue. How on earth do you deal with a tantrum if you don’t know if he’s just being a little rat-bag or if it’s a Symptom? I admire your love and courage in dealing with it so far.

    Lots and lots of hugs. And what everyone else said.

  23. Also late to the discussion due to swanning off to part of the country that is wilderness, ie no computer or broadband available. Am also torn between gratitude to a doctor who finally hears what you have been saying all along and sadness and sympathy for the new realities that might represent.

    You have been a sterling advocate for Harry and I’m sure you have the love and courage to continue that for as long as need be. No matter who thinks you are a crackpot, we know the truth of it.

    Love and hugs and virtual hand-holding from here.

    And my boys have both had shiners…so colloquialism here in the southern colonies as well.

  24. I have nothing to add to what has been written above, except to say that I think you are very brave and that I am keeping you and Harry in my thoughts.

Comments are closed.

%d bloggers like this: