By the time you read this post, I will have packed a suitcase, boarded a fast train to London and relocated the few things that Dominic and I can survive with into a room somewhere in the heart of Great Ormond Street hospital. I have been preparing to separate myself from my family and hand Dominic’s future over to someone else for a couple of months, ever since Dominic’s pains first started, but it doesn’t stop my heart beating faster and the tell tale beads of sweat appearing on my forehead whenever I actually let myself think about what the pains might actually mean. I’ve been busy, so very busy focusing on the little details that pepper an otherwise normal day that it conveniently makes focusing on the implications of the bigger picture an indulgence that I can’t justify. Can’t…won’t… same difference really. This hospital stay has been the looming full stop in a very long winded sentence, and in many ways I’m as relieved as I am terrified to be seeing what happens next, as there is only so much watching and waiting one mother can do.
I was reading through and editing a leaflet for SWAN UK a few weeks ago and despite the pages and pages of relevant information aimed at people just like me it was one simple phrase that stuck with me:
It is apparently a term used by the medical professions to mean watching a patient from afar… or at least far enough away to not be occupying a bed in one of their hospitals and only occasionally occupying a plastic chair in an outpatients’ waiting room. You would have thought that it was a phrase that bounces off the walls constantly in the over-used, under-resourced NHS consulting rooms, but this was the first time I’d (consciously) come across it. I think it resonated with me, not, as you might think, because watchful waiting is probably how most doctors who are perplexed by Dominic would class their involvement with us. It is because it describes perfectly the alert state of mind that you’ll find sitting quietly in the centre of my conscious thoughts, impervious to the clucking, fussing every day concerns that flitter around the edges trying to deal with Brownies, swimming, whether the ballet dress has actually made it through the wash let alone the woodcraft shirts and who is meant to be at what appointment and when and whether the face Lilia pulled when I asked her if she had any homework was because her “No” was a lie or because she needed the toilet… you know the sort that clutter up the part of you that was always going to write that book, or hike up that mountain or put together a band.
Watchful waiting is the part of me that is like the quiet cat, sat up high, hardly seeming to be aware of its surroundings yet all the while studying every grass blade moving. When you have a medically complex child, there is a part of you that never full relaxes, no matter how good things seem to be. Like a constantly tensed muscle that you forget to remind yourself to let relax, I watch him closely from a distance, looking for any change, anything that doesn’t seem usual, whilst rarely breaking stride from my normal routine. Remember the scene in The Matrix when Neo sees a cat running across a doorway and says ‘De Ja Vu’ absent mindedly? Everyone else that he is with immediately stops in their tracks, turns around and asks him urgent questions about what he saw before leaping into efficient action. I’m not applying a brooding, achingly cool personality to what is probably the cardiganed, frumpy jobsworth part of my brain, but I can’t help but draw a comparison between myself and Morpheus’ crew. Not that I often (with the help of lots of talcum powder) squeeze into a (slightly chaffing) black latex outfit, complete with sunglasses and attitude these days, but I do like to think that there is at least one part of my brain that remains focused, sharp and quick to act. You see, when you have a child like Dominic, even an unexpected slight sag of the shoulders can get part of my brain turning on its heel, already examining the evidence, ready to start going through possibilities, probabilities and expected outcomes. You see with medically complex children, there are rarely such things as coincidences, however much we like to try and convince ourselves that there might be- this time.
So what, pray, is the relevance of dragging Keanu into a post if not just to admire his very tight trousers and cool friends? Well Dominic has had me watching him closely for long enough to get me to a point where I’m glad that we are finally going into hospital to try and fix whatever has gone wonky so we can go back to having a life that isn’t centred around what we will do if Dominic suddenly deteriorates.
My last post hinted at the fact that he hadn’t been well. Since that was written his isolated incidences of abdominal pain, and a bit of leaking out of the hole that his feeding tube goes into all of a sudden became severe pain and quite a lot of leaking. The leaking first started after he ate anything solid. Dominic cannot eat much orally, as his stomach does not function very well thanks to numerous necessary but damaging procedures (your stomach and bowel just don’t like people messing with them, however gentle they try to be). Each operation he has had has reduced this function further. I’ve made huge progress with him recently, getting him to the point where he can eat tiny portions of certain foods, for example a chip, or a grape. It’s huge progress and has brought him enormous amounts of pleasure. However, it seemed a coincidence that every time he ate something solid like a bit of potato, he would then leak a couple of hours later. Knowing that talking of coincidences is often used by mothers like me as a tool to temporarily suspend the likely reality of another hospital stay, I watched him closely. I guess having your mother staring at you 24 hours a day might be a little disconcerting, even for a 5 year old, especially when she whips out a camera to photograph various parts of you that are leaking or looking especially gruesome at any time. It’s not out of some ghoulish desire to record Dominic’s less savoury achievements as he grows up, but more as simple insurance to avoid the delays that might occur should situations such as a junior doctor’s deciding that it is probably all caused by trapped wind arise.
Thankfully Dominic has a surgeon that I trust and I generally go straight to him. Despite the fact that he has stood in front of my youngest child’s abdominal contents on various occasions so is the undisputed expert on his inner plumbing, despite the fact that he had the good humour to laugh when Dominic pointed out that he looked just like Megamind, despite the fact that he has a strong Italian accent that means that when his secretary is typing his letters to me she hears ‘bottom’ instead of ‘button’ on the dictaphone which makes the letters much more fun to read, I truly trust him because I believe that Dominic is not simply another job to him. He spent (if you add up all the months Dominic has spent in hospital) a good couple of years looking after him, seeing him almost every day he has been in hospital, as he’s usually a surgical patient. Since Dominic became unwell enough for me to ask the community nurse to contact him (I still like to adhere to the accepted protocols if possible) and he saw us in outpatients he has been in regular contact, even when he is not on duty, just to check how Dominic is. More and more doctors who look after complex children are allowing themselves to accept that a relationship is formed between the patients and the professionals, and it was heartening to see the head of surgery at Great Ormond Street, Mr Joe Curry, openly talking on a documentry about Geat Ormond Street about how devastated he was when he lost one of his patients as he had grown to know him and like him so much. We have been unfortunate enough to experience the condemnation and fear that still surrounds any indication of doctors actually bonding with patients as though it automatically implies something unsavoury. Far from it, the best doctors I know, and the ones that friends of mine would trust their children’s lives with are the ones that care about the child and the family that the child is the heart of. A good surgeon is not one that sees a list of plumbing problems to fix in front of them, it’s one that appreciates the precious and irreplaceable piece of the family jigsaw they have been entrusted with, and that their job is to handle them as gently and kindly as possible so to return the child secure in the knowledge that their motivation was always what was in that child’s best interests and that they advocated for the child when the parents couldn’t.
As a parent, I want the person looking after my child to be emotionally invested in the outcome, and I think that there would be very few circumstances where this would compromise patient care. I can think of plenty of times where taking a traditional approach to doctor patient relationships could be very damaging however, and in our case, when someone stepped in to forceably remove an established doctor patient connection the results were devistating and put Dominic at real risk. If you want to read more about that then I suggest you go back to when I started this blog in August 2010 and read through our long stay in hospital.
And as to what happens now… a brief stay in the hospital or a summer staring out of grimy windows, who can tell. For the time being my place is still just close enough to watch the small, sleeping child that I’ll be watching from the sofa, from my bed, from the train carriage, from the chair by his hospital bed and waiting to find out what happens next. What I am watching is a perfect combination of strength and vulnerability in a small, slightly leaky, package and what I am learning is that undoubtedly watchful waiting is the essence of what being the mother to a child like Dominic really means.
The drawing at the beginning of the post is done especially for my good friend Jenny (who juggles far too many blogs not only this one about her kids, but also this one about photography and this other one about cakes) who happened to tell me that she missed the little pictures I used to draw before I made the decision to share photos of my children (and therefore open them up to an internet full of rampant miscreants. I’m a bad mother like that.)
~ For the avoidance of doubt Jenny didn’t imply I was a bad mother for dangling my children provocatively in front of the internet, she just simply told me she missed the drawings. I wouldn’t have referred to her as a good friend otherwise.
Want to know what happened next? It was a lot more than I ever imagined…
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Love and light to you all. I hope you find the answers that you seek and that Dominic has a speedy recovery.
Watchful waiting… yes. This is it exactly. Does Wyatt’s extremities being cool today mean that his heart is no longer being as efficient or that he was in the pool too long? Is that cough the onset of CHF? I have been doing 17 months of this as well without even thinking of it. Excellent post as always.
@JenLogan thanks… it’s a normal way of processing our children that runs in the background I think. If it was always a conscious we’d be (more) burnt out by now!
Hope you’re not in there for too long, give me a shout if you’re bored and I’ll pop down on the pretence of visiting ( but really just to pick your brain yet again! 🙂
Once again I am reminded that I learn more about how I should be a doctor (and a hopeful future paediatrician) from your blog than from any medical professionals blog I’ve come across, or even from any textbook. I always wonder about what is the “right” amount of oneself to invest, and you put it so well. There is the voice in the back of my head that warns of burnout if you invest too much (apparently, research shows that oncologists who have good relationships with their patients are more likely to suffer burnout) but burnout is no justification for stone-cold, un-emotional doctoring.
But it’s lovely to hear it from the patients/parents, as I think there’s sometimes a myth within medicine that we couldn’t possibly get “involved” as god forbid, the patients might find it a bit weird. Thank you for your reassurance that that’s not the case.
I hope everything goes as well as possible in hospital and that you’re not subjected to an extended stay.
Also, do hospital letters not get proofread?!?! I guess it’s more entertaining when they don’t….
It would seem livefyre doesn’t approve of paragraphs… sorry!
@TTBAMS I found your reply hugely interesting. I’m guessing you’re a med student/junior doctor? I think the balance is found depending what discipline you go into. With oncology all the patient have the potential to be long term ones and in highly emotional circumstances, so warmth with emotional distance must be a practiced balancing act. Our experience is with surgeons. Most patients are very short term. The surgeons do their job, and then as soon as they ease to be a surgical ‘problem’ they are moved to another ward or back to their local hospital. There are quite a few frequent fliers, but very few long term patients living on their wards. Investing themselves too much emotionally isn’t generally an issue for any of the doctors that choose to work in a speciality that makes sure their patients are asleep for the majority of the time they spend with them 🙂
I think the letters do get proof read, but I guess by the person that made the mistake in the first place!
@TTBAMS I found your reply hugely interesting. I’m guessing you’re a med student/junior doctor? I think the balance is found depending what discipline you go into. With oncology all the patients have the potential to be long term ones and in highly emotional circumstances, so warmth with emotional distance must be a practiced balancing act. Our experience is with surgeons. Most patients are very short term. The surgeons do their job, and then as soon as they cease to be a surgical ‘problem’ they are moved to another ward or back to their local hospital. There are quite a few frequent fliers, but very few long term patients living on their wards. Investing themselves too much emotionally isn’t generally an issue for any of the doctors that choose to work in a speciality that makes sure their patients are asleep for the majority of the time they spend with them 🙂
I think the letters do get proof read, but I guess by the person that made the mistake in the first place!
🙁 sorry to hear Dominic is in hospital, BAD timing 🙁 Still couldn’t help laughing at bits of your blog! I’m always amazed at how you find humour in all situations (I love the bit about Lilia pulling a face when asked about homework, and the idea of Bum instead of button!)
@Susan Cuin Lilia has a ‘lying face’ that she automatically pulls. It’s enormously helpful 🙂
Thank you x and shout if you need us xxxx
@Jenny perhaps you could phone for pizza from where you’re laid up on the couch? 🙂
Awww ((hugs)) thinking of you, I hope they can find out what’s wrong & you & Dominic are not there for too long. I also agree with all the stuff about Doctors, you need to know that they are thinking about the whole child and the child as part of a family and not just a set of plumbing. I love your drawing 🙂
@violetsdiary thanks, me too. Dominic’s insides have never said “tadahhhh” here is the problem, so I full expect the test tomorrow to show buggery all. One can but hope though!
Ugh & yuk :-(. We’re there next Weds & Thurs if you’re still around….. been a while since we’ve done a GOSH meet. K x
Hope it isn’t as bad as you’re imagining x
You are amazing. I love you.
This resonated with me; the never relaxing, always vigilant watching, despite the mayhem of ordinary life. The doctors we trust. The warily sharing our photos (I want to see your drawings 🙂 ) I admire your amazing writing skill, soak up your words, and I have to say, yours is one of the few blogs I read word. For. word.
@Downs Side Up Mwah x
Beautifully written, as usu, R. I love that phrase, ‘watchful waiting’. I found it resonated with how I, and I’m sure many other of your friends, relate to you and Dom at times like this – I don’t want to bother you with calls/texts/emails, so have been quietly watching out for you via your blog and occasional fleeting chats at school to see how everything is going. Interesting eh, that your blog can serve that ‘watchful waiting’ of your friends… though I’d rather not describe myself as a cat up on a roof (though love the analogy) as a cat rarely gives a damn or can do anything practical (for cat lovers, I have one and adore it, but you know what i mean!)
Oh, and yes, please please keep up with the sketchings of your kids – I loved the ones you had on your original blog style. Did you do that on your iPad?
Call me if you need anything – I can do a meal or two for the family whilst your in?
wow, that picture is brilliant. love it. Also, what Hayley said. I do feel like I live my life on the edge 90% of the time, but that edge is nowhere near as high up as yours. I admire your strength to carry on, although I know you wish you didn’t need to have that (or didn’t have the need for that, if that makes better sense??!) but of course you are doing naturally the best for your family. I feel privileged that you let us share this journey with you, and I hope the knowledge that we are all out there rooting for you both to come home very soon helps in some very tiny way (well I wish it helped in a big way, but hopefully you get what I’m trying to say). Fingers crossed and virtual hugs x
Somehow I missed all Dominic’s problems and I’m really sorry about that, and I hope you don’t both spend the summer looking out of grimy windows. Hopefully the watchful waiting will end soon….for my special girl it did after she got her tonsils out, and she hasn’t looked back since. Maybe there’ll be something like that for Dominic, I really hope so xx
Curry/Piearro are legends in their own lunchtime and Charlotte`s heros. May they come up with some magic for your brown eyed boy. jx
@RenataBplus3 How’s it going? xx
@violetsdiary good thank you. We left hosp yesterday with a hurried agreement about what to do. Got home just in time to leave for Holland
@RenataBplus3 whoohoo :)) that’s great 4 u all that you’ve made it on your holiday. Have a lovely time. xx
@violetsdiary oh and thanks for the rt
@RenataBplus3 just to say I found your blog really interesting and best wishes to you and to Dominic! 🙂
I hope that in the time it’s taken between you writing the post and me commenting on it (yet another one of “those” weeks! Mostly good busy though) you’ve had some answers at the hospital and they’ve been able to help. x x
Someone stepping in and removing the doctor patient relationship didn’t put my friend at risk, instead it killed her aged 30. She had sent gifts to Dominic in the past.
Its great Dominic has managed some solids however small, well done Dominic
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