18 Oct Molly’s Story
I’ll admit up front to being biased. But to me, she’s got the face of an (occasionally wicked) angel, and the sharpest sweetest mind I’ve ever seen in a five year old. She’s opinionated and wily and has a massive funnybone and surprisingly good taste in music. All those things make her special, but what makes her really special is her medical situation.
Molly was born early, at 34 weeks, and only weighed 1655g. At the time I thought it was the end of the world, being sent home from hospital without my baby while she stayed in the Special Care Unit. At the time, a month seemed an interminable wait before I could bring home my tiny, funny looking, but apparently healthy baby.
She’d only been home for two weeks when she first became ill. Because she was still so tiny, and it was the middle of winter, I was obsessively taking her temperature every three hours and it seemed to be slightly up. Took her to the doctor, was told to give her Pamol and not to worry. We repeated this scenario every twelve hours for the next day and a half, until I rang the Special Care Unit, feeling sure that things weren’t right, and was told to take her into Starship.
After eight vile hours in Emergency – including a blood test, two lumbar punctures (the first one didn’t work) and a bladder stab (she was too small for a catheter) they admitted her with a urinary tract infection, septicaemia, and suspected meningitis. So much for Pamol. It was two weeks on IV antibiotics for us.
And so to our first stay at Starship. I still clung to hopes of getting out and never seeing another hospital for the rest of her childhood. Hah! It was a weird time – Molly’s my only child and I was deep in the “first child learning curve” – living with her in a tiny room in the infectious ward wasn’t the ideal introduction and I was not, as you can probably imagine, a happy person at that time.
We finally got sent home, on daily antibiotics, and got into some sort of normal life for a few weeks, till the time came for Molly to have an MCU, to see whether she had renal reflux. I took her back to Starship and the test was done amid much angry screaming (on her part I hasten to add, not mine). I watched it on the monitors and just felt the blood drain from my face… I hadn’t seen one of these before but I was damn sure the dye wasn’t supposed to flow out to the extremities of the kidneys like that. I remember saying over and over, “What Grade is it? What Grade is it?” to the technicians, who kept murmuring soothingly that the doctor would have to have a look. But I knew the answer. It was Grade Five, both sides – as bad as it could get. That meant an operation for sure.
At six months, Molls had both her ureters re-implanted into her bladder in an attempt to lessen the reflux. I’ve spent a lot of time in hospital with her since then, but that time was one of the worst. I was deep in post-natal depression for starters – although I wouldn’t take any medication because of breast feeding – and for seconds, everything went wrong. After the operation, she seemed fatter to me… it took a couple of days for me to realise that she was swelling up. She had a suprapubic catheter in, but on day two she stopped passing urine. Nothing. The kidneys had temporarily gone on strike. Her room was full of paediatric intensivists, and nephrologists, and the surgeons, and nurses. They needed to get a line into her but couldn’t get one in… they tried, and tried, each session provoking such horrible cries, and finally put a line into a vein on her poor little bald head. I’ll never forget her, lying exhausted over my mother’s shoulder, a poor swollen tiny little creature with an inverted polystyrene coffee cup taped to her head at a tragically rakish angle, so she wouldn’t try to pull the line out. Still makes me cry.
They decided it had to be a central line, into the jugular and down close to her heart, because she was doing so badly. But the anaesthetist on duty wasn’t willing to put her under. The chief anaesthetist had to be called back in, late on Saturday night, to get the line in. And, thank god, her kidneys started up again.
The road to recovery seemed to take forever. Even when she started to get better, she couldn’t sleep, and seemed to be in constant pain whenever she moved. She’d fall asleep on my lap, after feeding, as I sat in the Lazyboy chair the nurses had lent me… but the second I shifted her body would convulse and she’d shriek awake. It took a week of this until one wonderful nurse on the nightshift said that sometimes the suprapubic catheters could cause bladder spasms, and she could give Molly some pain relief for that. Which she did, and at last we got a few hours’ sleep.
Finally we were allowed to go home, although we weren’t allowed to have the central line taken out until a week later… “just in case”. The surgeons seemed satisfied that all would be well.
Four months later we had another MCU, to check the situation before maybe going off antibiotics.
I watched the screen so intently, knowing what I was looking for this time. And dammit – I saw it again. Still Grade Five. Still both sides. The operation was a total failure.
They tried again a few months later, a “teflon sting” at the valves of the ureters. They couldn’t even find the right spot on one side, but did it on the other. Still no help at all.
Her kidney function was tested and came back with forty eight percent overall function, scarring on both sides. And also around this time they started to talk about how small her bladder was. Which seemed quite irrelevant to me at the time – I kind of thought, one problem at a time please lads!!
Things pottered on over the next year or two – daily antibiotics, regular breakthrough infections, the constant juggle to find another antibiotic that she could tolerate (some of them make her vomit horribly). Regular hospital stays when something broke through and we were unlucky enough to treat it with an antibiotic it was resistant to. We were (still are) under the care of the paediatric renal team, Dr Wong and Dr Morris, and got to know them, and a lot of the other doctors and nurses, quite well. Too well – it’s kind of depressing to get admitted to the ward and be greeted by your first name!
Potty training didn’t go well. I used to get so irritated with her – I’m competitive by nature and I couldn’t bear that all the other children her age were managing fine and she couldn’t stay dry for more than an hour. That small bladder thing started to assume more importance in my mind.
On one of our regular visits to Starship, Dr Wong said that the team felt that a bladder augmentation operation might be the way to go. They wanted to do a couple of tests first though – a radiologist in their weekly conference had noted that Molly’s bladder was an odd shape, which might indicate a spinal problem. But they didn’t think that was very likely, since she walked and ran and jumped just fine, and had full bowel control.
The MRI was done under a general. And, our run of luck held true – there was a spinal problem. Her filum – the bottom of the spinal cord – was tethered to her spinal column. That meant surgery. On the spine. Neurosurgery – the mere idea frightened the bejeezus out of me.
The surgery was done when she was three and a half, at Auckland Hospital – Starship didn’t have the facilities at the time. We were told that she would have to stay still, flat on her back, for two days after the operation. I wondered privately if they were mad, or maybe they’d just never seen a three year old before??
That operation was scary. You know how they always have to warn you about everything that could possibly go wrong, before you sign the consent? I couldn’t believe how many things could go wrong on this one, just because it was in the spine. And after our previous experience with the re-implantation – well, you can imagine my paranoia levels.
But the surgeon, Mr Furneaux, was very… reassuring. Partly because he was so “old school” looking… partly because of his fabulous handlebar moustache. And it went well. Molly was angelic about staying still, even when her friends visited she advised them that they would have to come and lie down beside her because she couldn’t sit up. As soon as she got the all clear to sit up, that was it, there was no stopping her. It was a great recovery.
Didn’t help her basic problem though – she had a tiny, high pressure bladder and serious reflux still occurring. Dr Wong explained that it has to be dealt with; as and when her kidneys fail (and they will, it’s just a matter of time) noone will transplant into her system as it is; it would just kill off another kidney.
The team at Starship wanted to do a bladder augmentation using part of her bowel. This will also mean that she loses the ability to void her bladder properly, and will need to catheterise herself daily. They suggested a Mitrofanoff stoma, in which the appendix is used to make a channel from the bladder, up to the navel – that way she could catheterise through the navel, which is a much easier thing for a little girl to achieve than urethral catheterisation.
We talked about it, read about it, talked to the surgeons some more, talked to other surgeons… and just couldn’t feel quite right about it. There are a lot of nasty side effects to using bowel in this way and we were afraid. We sought third opinions locally, and were told – as we suspected – that the best in the field were already in the team at Starship, and if we wanted to have another serious opinion, we’d need to go overseas. A surgeon at the Royal Melbourne Children’s Hospital was recommended.
As luck would have it, a work trip to Melbourne turned up a few weeks later.And the surgeon, Mr Dewan, agreed to see me, armed with Molly’s xrays.
He was great (although I cried hopelessly throughout our meeting – I have more or less NO control over my tear ducts I’m afraid). He agreed that the surgery was very necessary, but disagreed about using bowel. He suggested using one of Molly’s enlarged ureters to enlarge the bladder, and said that he was sure she could learn to catheterise urethrally.
I duly reported back to the team at Starship, enthused by this possibility. And that’s where we are right now… trying to arrange for Mr Dewan to come to Auckland to operate on Molly. If that doesn’t pan out, it’s a trip to Melbourne for us.
So there – it’s been a long story. And that’s only about ten percent of it. As for the future… it’s best not to dwell. I can’t believe how much this whole thing has taught me, and changed me (I used to be relatively timid, but now… let’s just say, medical professionals beware, bolshy mother on the loose).
Doctors aren’t gods. In fact a well informed parent, dealing with a chronic condition day in and day out, can come close to being an equal in their child’s care. Especially when you’re dealing with a sensible, good man like Dr Wong who is willing to let you participate in an informed manner.
Kids are massively adaptable. Things that I originally saw as impossible situations for Molly just get dealt with. Although she does have a SERIOUS needle phobia. (There must be a proper Latin term for that one, I’m sure.)
You shouldn’t pay too much attention to what other people’s children are doing. Your child is your child. Okay, so they’ve managed to get them sleeping through the night/eating their greens/running off to school with no separation anxiety, while your little insomniac lives on crackers and Barbie pasta and cries every morning at nine am. Good on them. But until they’ve been in your shoes, with your child, they can’t possibly see how much you’ve achieved.
Even when you’ve got a child who needs a lot of care, you shouldn’t forget that this is your life too and you need to live it in a way that makes you happy. If that means working (and for me it does), do it. If that means staying at home and doing without some luxuries, do it. You didn’t stop existing as an individual when things went screwy with your child.
And, I think most importantly, I’ve learned that Molly’s life isn’t going to be somehow inferior to anyone else’s just because she has these big problems to deal with. In fact in some ways it’s richer. I’ve always believed that you need darkness to appreciate light, sadness to recognise happiness. Molly’s been brave in ways that most kids her age can’t imagine. She’s screamed and fought as a line was put in and then wiped her tears and said to the resident, “Thank you for doing that quickly.” She’s the coolest five year old I know, and her experiences – and ours – are all part of how she got that way.
(Although, as I said, I am biased.)
This is the story of Molly’s bladder enlargement operation, which took place in September 2001, when Molly was six years old. If you’ve read part one of Molly’s story, you know that we had spoken with a surgeon in Melbourne, Professor Paddy Dewan, and were trying to arrange for him to operate on her. We tried to have it done in Auckland at Starship, but at the last minute – three days before the scheduled operation – Molly got a yeast infection and everything had to be cancelled. Rescheduling Paddy and Starship turned out to be so difficult that, in the end, we decided to go to the Royal Children’s in Melbourne and have the operation there.
It’s a bit of a mixture – lots of it I wrote while we were in Melbourne, the rest has been put together recently to finish it off. So some of this story is very present tense, diary-format, and clearly written by a sleep-deprived, emotionally stressed person – you have been warned!
It’s the twenty second of September, and it’s twenty four hours since Molly got her new bladder.
What a twenty four hours – what a week. I feel exhausted and emotionally drained and yet the long haul is still to come. I dread to think how poor Molly is feeling.
We arrived in Melbourne on Tuesday, September 18th. It had been a drama right up to the last, with the airlines cancelling flights after the US bombing and the closure of Ansett, and the Tullamarine airport workers threatening strike action – to the point where, three days before we were due to leave, our contact at Air New Zealand couldn’t even guarantee that our flight would be leaving at all. In the end, I was just so pleased to get here. It was a long day – we were up at four am (two am in Melbourne time) and the whole day we were watching Molly like hawks, thinking, she MUSTN’T get sick now! A sore stomach and an attack of the runs on the plane had our hearts in our mouths but turned into nothing more than too much Coke and rich food (and probably nerves also I guess). We were pretty tired by the time we made it to our apartment, right opposite the Royal Childrens on Flemington Road, our home for the next six weeks.
That night in bed, and the late late hour of seven thirty, I counted up how many times we’d dragged her to the toilet in that one day and got to seventeen. Poor little mouse, no wonder she whines about it. But we won’t be doing that any more – not in quite the same way.
On Wednesday we went for a DMSA scan, in which a radioactive substance is injected into a vein, and then a picture taken after three hours. It was obvious even to me, on the basis of two previous DMSAs, that the scarring on her kidneys has worsened. Then we tried to pretend we were just on holiday, and took Molly down into town, exploring shops, having a late lunch/early dinner in Melbourne Central under the clock tower, and taking a tram home.
Tuesday, we couldn’t pretend it was a holiday anymore – we saw Paddy Dewan at 9.30. He reviewed her xrays again, and the DMSA results, and had a look at her. Paddy had originally recommended that we teach Molly to catheterise herself through her urethra, since, after bladder enlargement, she wouldn’t be able to empty her bladder completely in the normal way; the alternative was an external stoma, a passage created between her bladder and her abdomen that she could catheterise. We had tried, but ultimately failed, to teach her to catheterise normally, and we now felt that a stoma was the only option.
The results of his inspection were sad, but validating – he said that it would have been very, very hard for her to catheterise herself (as he had recommended, and as we had repeatedly tried, and failed, to teach her to do) because of the physical location of her urethra. Having Paddy’s support for the stoma option made Liam and me feel much better about the decision – it was now based on a medical opinion, instead of being based on our failure to teach our daughter to catheterise, against our surgeons recommendation. It’s hard enough to decide something like this for someone you love, without this extra burden of guilt being thrown in.
And there was another change of plan. We were assuming that we would have to have a mitrofanoff stoma, using her appendix, but Paddy was determined to avoid using any part of the bowel system in this operation, to keep the urinary tract discrete and self contained. So his plan was this:
- To sever her left ureter half way down.
- To attach the top half of her left ureter to her right ureter, so that both kidneys would drain through the right side
- To split the bottom section of her left ureter in half, split her bladder in half, and use the ureter to enlarge the bladder
- To then split the right ureter two thirds of the way down, and reimplant the top half into her bladder
- To take the bottom section of her right ureter and bring it out as a stoma low on her abdomen.
- All in all, a very thorough re-engineering of her urinary tract.
Paddy warned that, because the stoma was being created by the bottom half of the right ureter, he couldn’t reimplant the bladder end of that piece of ureter without losing blood supply and killing the ureter, so it could still possibly have leakage due to reflux, and she may need another operation later to address that. This was disappointing, of course, but the advantage of avoiding the appendix can’t be discounted.
He also warned that this was a provisional plan only – that, once he opened her up, he would have to work with whatever he found to create the best solution. He likened it to a Meccano set – you’ve only got the pieces that you’ve got.
I was frightened by this, of course… but still, my second meeting with Paddy Dewan reconfirmed my first impression of a year ago – that this man knew what he was doing and was going to do his damnedest to make this work. He told us that he wasn’t necessarily going to look for the best outcome for the next six months – he was going to look for the best outcome for when Molly is twenty one years old, for the best outcome in fifty or sixty or seventy years time. To hear the surgeon talking about preparing for her future in that way made it all a little easier to bear.
Then we were admitted, up to Ward Four Main. In some ways it was so familiar from all our times in Starship – in others, so different. Slightly more spacious, slightly better equipped… somehow a lot quieter, there always seem to be a lot of children roaming the halls of Starship, but there were hardly any siblings lurching around Ward Four. The nurses station is right outside our four bed room, so they are always on hand and so responsive. I couldn’t believe it after two days when I had never once had occasion to call the nurse!! But that arrangement makes things a lot noisier at night too – Molly can apparently sleep through anything but her parents are less talented.
Molly made instant friends with the nurses, giving them all stickers from her latest “surprise” gift – we came armed to the gills with treats and presents to get her through the hard days. We met Stella, the stomal therapist, who will teach us all to use Molly’s new stoma in the weeks ahead; she couldn’t have been a nicer kinder person. And as for our afternoon nurse, Kelly – what a sweetheart, and so efficient. I hope she’ll be on a lot, she was great.
In the afternoon Molly started to take GoLytely, to clean out her bowels just in case Paddy had to resort to the appendix. It tasted like salt water, but she was a real trooper. Kelly sweetened it up with cordial and it wasn’t quite so bad, but she still had to get through a glass an hour for six hours. By hour four she still hadn’t gone… hour five, nothing except a growling stomach and a few false alarms… then suddenly, wham!!! A thoroughly explosive situation which lasted all evening, through the night and to the morning of her big day.
Friday – Operation Day
And so it was here, the day we’d been waiting for, planning for, praying for – dreading and yet desperately welcoming. How can I describe it to you? Tense doesn’t even begin to cover the feel of that day…it was a terrible day of fear, so afraid that something would go wrong, that we had made the wrong decision, had made a choice that would harm our darling instead of making her better.
Molly was fourth on the day’s list… she was taken down to theatre at about ten am. So tiny in her little hospital gown, so vulnerable on her little wheeled bed. I’ve held her now through so many general anaesthetics…this was her eighth… and it still rips my heart in two as she struggles against it, cries out, can’t help breathing in the gas and then her eyes flutter closed and she goes limp as I whisper in her ear how it will all be over soon and we will be with her when she wakes up, and she mustn’t be afraid. But I am a hypocrite because I am so very, very afraid. I let her go and said fiercely, you look after her, okay? And they assured me that they would and I left her with the tears streaming down my cheeks. It’s so hard to walk away… you know it’s the right thing but how can it be easy to give over your unconscious child, your heart, to men who are going to drug her and cut into her? Who will be trying their best but who will hurt her, may damage her, may even, god forbid, kill her? Who will slice into her baby skin and leave scars on her for the rest of her life, to add to the other myriad scars over her tiny body.
I know how melodramatic this sounds, but it’s what you go through… it is dramatic, and terrifying, and awful.
We’d been told it would take about two and a half to three hours. It took five and a half hours. Such an endless limbo. You sit there, blindly reading old Time magazines, watching TV tennis between two people you’ve never even heard of, eating food that you don’t want and you can’t taste, just to keep your mind busy enough, just so that you won’t start crying hysterically and run down to the theatre and break in and gather your baby in your arms and take her away, somewhere safe. Just outside the parents’ waiting room was a generator, which would lurch into loud and roaring life every ten or fifteen minutes and it never failed to make my heart climb into my mouth. After three and a half hours a nurse came to tell us that it was going well, but slowly, that it was going to take another hour and a half. She was reassuring, but the tears came anyway, why was it taking so long, what was really going wrong, what weren’t we being told?
Finally, at half past three, Paddy emerged from theatre and called us into the parent interview room. He looked exhausted, red circles under his eyes. He said that it had taken a long time because it was difficult and he’d gone very slowly… he described her bladder as “horrible” and told us it was the hardest ureterocystoplasty he’d ever done. But he assured us that, in the end, everything looked good, and had gone according to plan… he’d made the stoma with the lower half of the right ureter, hadn’t had to use the appendix. The lump in my throat was so big, the sea of tears so close that I could barely thank him, but I kept thinking, thank god we came here, thank god we persevered, thank god she was with the best.
It was only a minute or two before we were called into the recovery room. Two beds, two small and inert bodies, which was my darling? We found her and the tears came in floods. She was orange from chest to thighs, painted in betadine, a huge splint on her left arm, pale and waxy and swollen with fluid, three catheters coming from her body, blood pooling under her. My baby, my darling.
I leant over her, stroked her, talked to her, held her hand. She mumbled, thickly, drugged, and I had to bend down to her swollen lips to hear her say, Mummy, I’m being brave, I’m being brave.
The recovery nurse told us that the first thing she said when she woke up was “is it over?” And when she was told that yes, it was over, she said “Thank you”.
This child is at her best when she’s at her worst. I only wish I was half as strong and brave.
It was Liam’s turn to stay with her the night of the operation, and she was mostly out of it on morphine that evening. I woke up at six, and didn’t want to go in yet in case they were still sleeping.
But when I got in, at seven forty five – what a joy. Molly was propped up in bed, doing MATH PROBLEMS with her Daddy. She’d slept most of the night with a bit of a wake up at two, and woken at six, just as I had. She was no longer waxy and yellow, her eyes were bright but tired, she was nattering away. I couldn’t believe how good she looked.
Later that morning the nurse washed her, changed her dressing, and then just before midday she was helped out of bed and into a chair by the bedside, piled high with pillows. It was a slow, three person process, but still a huge step. While she was sitting there, dozing in the sunshine, Paddy came by to see her, and his face lit up when he saw her – she looks great! He joked that after yesterday’s operation, it was all HE could do to get out of bed and walk around. He looked so happy with her progress and said that it was a very very good sign.
By late afternoon she had actually pulled herself to sitting unsupported (from a starting point of a raised bed I hasten to add) and although she wasn’t comfortably moving by any stretch of the imagination, she certainly wasn’t rigid with pain. Her legs were very swollen from the extra fluid still and we had to encourage her to move them as much as possible, and she felt nauseous much of the time, but she was generally doing great.
The ureteric catheter was draining well and the urine wasn’t too bloody. Some blood was being passed through the suprapubic catheter, nothing through the stoma catheter. After our experience after her reimplantation, Liam and I were watching the urine output like hawks. I think it’ll be at least a week before we can stop staring at the drip, drip, drip into that bag.
Three or four days post-op, with a bag of goodies donated by the Friends of the Hospital ladies. You can see the three drainage bags that were her constant companions for a few weeks – ureteric on the seat, draining well; suprapubic down on the right, just dripping some blood; and mitrofanoff bag is on the floor at left, hard to make out.
Two and a half weeks later, we still hadn’t stopped staring at the drip, drip, drip.
Things seemed to be going fabulously for the first week – Molly was doing, in Paddy’s words, “disgustingly well” – there was great output through the ureteric, she was feeling good and looking good and moving around well. The relief felt like a helium balloon in my heart, at last, something had gone really really well. The time in hospital didn’t seem so insurmountable, especially once my mother arrived and we could start splitting up the shifts more, so that Liam and I only had to do every other night and then either a morning or an evening shift, and Mum covered the afternoons. My sister Pippa arrived too, on day seven after the op, and couldn’t believe how well Molly was doing. Paddy was even talking about being sent home before the MCU which was due on day twelve.
That didn’t happen, because Molly started having very painful bladder spasms and Paddy put her on an infusion of marcaine into the bladder through the Mitrofanoff, so we weren’t able to leave the hospital. Still, things were going very well up until the test day.
The MCU involved the injection of contrast fluid into Molly’s SPC (suprapubic catheter) to get a picture of the new bladder, and to ensure that there was no leakage along the suture lines. They would then inject more fluid into the ureteric catheter so that they could get an xray of the upper tract, the ureters and kidneys.
The radiographer had barely started injecting the fluid into the bladder before Molly began to cry and whimper – I had promised her faithfully that this test wouldn’t hurt, but it did, badly, and her little face was screwed up with pain. After only fifteen mls, the radiographer stopped, saying that he didn’t want to push it if it was hurting her. I knew it was early days yet, but fifteen mls? That’s no bladder capacity at all.
The pictures of the upper tract revealed it to be very swollen as usual. No change there. But on review, the doctors assured us that it was mostly as expected, and was looking great in terms of leakage – there was none, so we could start with part two – trying to get the bladder to fill and drain through the SPC instead of the ureteric. We raised the ureteric bag up to bed height to increase the pressure and encourage the urine to drain past the ureteric catheter into the bladder.
Bed height did nothing. Over the next few days, the height of the bag was raised until it was above Molly’s head when she was sitting up in bed. At last a little began to drain through the SPC. We then began clamping and periodically releasing the SPC, at first aiming for an hour at a time, to get the bladder slowly used to containing urine again.
The first hour, Molly only made it to thirty five minutes before she experienced pain. We drained it – thirty mls. Well, better than fifteen. The next hour, she managed forty minutes… the next, forty five, until, by the end of the day, she was doing the whole hour without pain.
But not everything was draining through the SPC. If we brought the ureteric bag down, it was like a mini Niagara Falls, and two hundred mls would pour out of her backed up kidneys.
After two days of this Paddy decided that something had to be done. The ureteric catheter, which entered her bladder and went up the single remaining ureter, seemed to be blocking the entrance to the bladder. He decided to take Molly back to theatre on day 15, and replace the catheter with a smaller one, to see if she would drain around it. He was being slow, careful and conservative with his treatment – he wouldn’t risk removing the catheter, because of the risk of the kidneys not draining at all, and the difficulties he would face in reinserting another ureteric catheter from scratch.
Going back to theatre was hard. Molly knew more about what she would face, but that didn’t make it easier, if anything it was more difficult for her because last operation had been so major. She sat on the gurney going down to theatre with a trembling lip, tears welling in her eyes, clutching my hand. When she had to say goodbye to Liam to go through to the anaesthetic room she burst into tears, and by the time we came to gassing her she was almost hysterical, holding her hands over her mouth and nose, screaming, “No! No!” I had to prise her fingers away, hold her down as they put the mask on her face and she struggled and screamed. It was awful.
Only an hour this time. When Paddy came to get us, he said that he had been able to replace the catheter with no difficulty, but the bladder was still very oedematous and swollen. Time would tell whether this had improved the drainage to the bladder. When we went through to recovery Molly was white and shaking with cold, huddled under an airwarmed blanket, sleepy but not looking great. Even when we got up to the ward she was still chilled and shaky and teary.
Luckily for us, in a piece of wonderful timing, half an hour later the “Clown Doctors” arrived. The Royal Children’s has two roaming clown doctors, who come round the wards in silly costumes and tell jokes, do “magic” tricks, and generally bring a lot of smiles to bored or sad little faces. Molly lit up like a firecracker. By this time we were in our own room and she had half an hour of personalised entertainment, which made such a difference to her.
Back to another period of waiting. Life in the hospital had reached a sort of surreal normality. Every second night in the fold out chair-bed beside Molly’s bed (those are great, if I ever win Lotto I’m going to buy them for Starship). Four hours on, four hours off most of the days. Nerves fraying to the point where my mother and I had our first fight since I was fourteen, and only the second one of our entire lives. Everybody wanted to help, but none of us was emotionally uninvolved, and each of us had such individual ways of coping with the experience. It was very hard. Every place I went, I wanted to be somewhere else – constantly drawn like a magnet to Molly’s room, but feeling trapped like a rat as soon as I got there, desperate to leave again, but knowing that, until the day I left holding her hand, it wouldn’t make me feel any better.
A third trip to theatre
Well, the smaller catheter was not the silver bullet we had been looking for. After another five days of raising the bags, playing with the pressure, and trying to get drainage past the ureteric catheter, Paddy decided we had to try something else.
He came in to talk to me one afternoon. One of the great things about Paddy was that he didn’t just arrive and tell you his decision – he talked us through all the options he was evaluating, and led us to understand the decisions he made. At this point, he said, he had two options. One was to assume that the catheter was blocking the entrance to the bladder, and just remove it. But once it was out… if the problem continued, it would be urgent, and he would have to go in through her abdomen again to find the point where the ureter was entering the bladder, to do a reimplant.
Alternatively… the problem could be being caused by all the swelling and oedema in her horrid little bladder, and could just need time to settle down. This would mean putting in a stent, running from her bladder, up her one ureter, to drain through the problematic point of entry while it healed.
(I remember this as another point when I felt so glad to be under Paddy’s care. He had explained the stent to me, and drawn pictures of how it would run from her bladder, up her single remaining ureter, to one of her kidneys. In my mind’s eye, this stent looked like a tube, a catheter, and I could not for the life of me understand how urine from BOTH kidneys could drain through it if the end of it was sitting in ONE kidney. There was a whole roomful of doctors, nurses, family, and I kept trying to explain why I didn’t get it, and we went round and round and round for at least fifteen minutes but Paddy wouldn’t give up on me – he just kept explaining, over and over again, and at last he slapped his forehead and said “You don’t know that the stent has holes all the way down its length!” And light dawned for all. But he never lost patience with me and he understood how important it was for me to understand, and what’s more he never made me look stupid in front of everyone. In case you haven’t gathered by now, I’m a bit of a fan.)
The only downside was that she would have to come back to hospital to have the stent removed in six months time. Which was a pretty big downside.
Still, it was the best option. Paddy’s approach is to go aggressively and optimistically when things are going well, and very slowly and cautiously when problems are encountered. So slow and cautious it was. Which meant a third trip to theatre.
Poor little Molly had really had enough by now. She decided that she wanted Liam to take her to the anaesthetic room this time, I think because she had memories of how hard it was to say goodbye to him; turned out it was just as hard to say goodbye to mummy! The old line about just being brave for a little while and it would all be over was starting to wear a little thin.
This was a short round as it turned out, only an hour and a bit. We were in day stay this time, surrounded by luckier people who were just popping in and out. I sat in the waiting room loathing them all for their low-risk problems. When Paddy came out, Liam had gone for a three minute wander (sitting still and waiting is torture for him).
Paddy didn’t look happy. He said that the stent was in place, but he wasn’t sure of the likely outcome; the bladder didn’t appear to be responding well, and he couldn’t say how much volume we were likely to have achieved. He started to talk about next steps; about experimental procedures in Germany, about a surgeon in South America who was doing something interesting. I don’t think I could say a sensible word back, I felt like the bottom was falling out of my world… all this, four weeks of this, and now it was no use? Germany?
They called us through to day stay recovery and I felt like I was going to spend the rest of my life going through this emotional horror; how many more times did we have to do this? I got to the side of her bed and saw her, still unconscious, and suddenly felt utterly sick. I told the nurse, I’m going to be ill, and she led me to their utility room, perched me by the sink, and was unbearably kind while I sobbed and vomited and shook and vomited and sobbed. Don’t worry, she’d say soothingly, lots of people feel like this when they see their child after an operation. And that just made it worse, I wanted to shake her and shout, I’m not a weakling, I’ve been brave through so MANY operations, this isn’t just a freaking tonsillectomy and apparently this isn’t even close to the end of it. You’ve got no idea.
Molly woke up very disoriented and in pain. She was crying and shouting and refused to take the codeine the nurse was proffering, pushing her hands away. Poor Liam… both his girls were at the end of their tethers.
But, with the stent in place, things did start improving. Urine started draining cleanly and fast through the bladder catheter, and at normal pressures. By then, I felt that even if it was only a six month reprieve, it was absolutely the right decision.
New shoes, new dress, and only two tubes left!
A few days later Molly was perked up even more by visits from her Auntie Willa, and from her best friend Hannah, who lives in Sydney. Hannah’s parents, Rachel and Billy, took me out for dinner and generally cheered us all up; Hannah gave Molly love and normality and acceptance and didn’t seem fazed at all that her friend was wandering around with a big plastic bag of wee clipped to her back. It was good timing to see that, at a time when normality and acceptance seemed close to unattainable. Thank you Hannah, for looking right through the strangeness and seeing your friend!
The next challenge… learning to catheterise
So, now that we had drainage, and the stoma had had time to heal, we were ready to start learning to use it.
Molly’s stoma is down low on her abdomen, it looks like a tiny fold of skin or a very small, closed nostril. It’s a beautiful piece of work. When we first started to use it, it was a little more raw looking, and down at the end of a long scar; a catheter had been coming out of it since the first operation. Now, we had to remove that catheter, and learn to insert a clean catheter into it every three hours, to drain Molly’s bladder. She could still pass some urine normally, but no longer had the bladder muscles to completely empty her system that way.
Suddenly, Stella (the stomal therapist) became the centre of our universe. She had talked to us every couple of days in the past few weeks, made friends with Molly, gained her trust. Now we were entirely in her hands.
Imagine the fear factor that Molly was facing. We were going to pull out a catheter that had been in her body for weeks, and tell her to push another one into her abdomen, through a hole at the end of a tender scar. We’d been talking positively about this whole concept for months and months, till she was actually musing about how good it would be, but when it came down to it, it was pretty frightening for her.
She wouldn’t let Stella try. Only Mummy was allowed to do it. But even that took nearly an hour of coaxing, stern talking, threatening… Molly kept pushing my hand away at the last second, or pulling her knees up to her chest, and crying, and begging me to stop. My hand was shaking like a leaf but I refused to show fear. Eventually we did it. She cried out when I had to push it through the bladder wall, and said that it hurt. I was surprised at the amount of pressure it took… I was very nervous about doing this every three hours for ever.
That day, we did it twice; the second time, we resorted to a nurse, Mark, holding her hands and legs so she couldn’t push me away, and it broke my heart. The next day, she got worse about it. Over an hour each time, huge tantrumming fits, screaming, entreaties to go home, to stop, to leave her alone.
The last one that day, I was on. I spent nearly an hour on it. She would admit that it didn’t really hurt, except for the moment of going “through the door” to her bladder, but she couldn’t overcome the fear. In the end I brought out my ultimate threat. If you don’t let me do this by the time I count to ten, I’m leaving, and a nurse is going to come and do it. I couldn’t look at Liam and Stella when I said that, I felt so harsh. But she didn’t let me. And so I said, I’m going to get the nurse, and Molly, I’m not coming back till this is done, and then I left.
I could hear her screams echoing down the corridor. I sat outside but they were so loud, she was begging me to come back, she was so angry and so betrayed. I locked myself in the toilet, close enough to hear but out of the public eye. I thought I was going to throw up again from crying so hard. How were we going to do this, every day, over and over again for ever? How could we ever get our lives back?
After that session, Stella called Paddy, and told him what was happening. She called me over to the phone, telling me he wanted to talk to me.
Paddy said, Liz, this isn’t doing Molly any good and it isn’t doing you and Liam any good. You’ve tried reasoning, but that’s not going to work. She can’t get past the fear barrier by herself – you’re going to have to push her through it until it isn’t there for her anymore. Tomorrow, she’s got ten minutes each time, and at the end of ten minutes, you must hold her down and do it. She has to learn that it’s okay.
It sounded like such harsh advice. But we didn’t have any alternative plan. I went back and told Molly and Liam what Paddy had said, and Paddy’s word was law, so tomorrow, that would be the rule.
Next day, feeling like we were walking into a lion’s den, we started, nurse on hand. Ten minutes Molly, if we can’t do it in ten minutes then we are holding you down and doing it for you, because Paddy says so. I think it probably took more like twelve – but it was a hell of a lot better than an hour and a quarter.
She never had to be held down again. There were a couple of close calls, and it wasn’t instant, but over the next week – with the aid of a success chart on the wall for all to see, and plenty of bribery – she got better and better. One afternoon I was over at our apartment, afternoon-napping, and there was a knock on the door. I opened it and started to cry instantly – there were Liam and Molly, standing there grinning, the happiest things you’ve ever seen. It was only an afternoon visit, but my girl had left the hospital.
A day or so later, she was reliable enough to have her other suprapubic catheter taken out. She was pretty blasé about the catheter thing by then and was utterly shocked when the suprapubic came out with a pop and had a large collapsing multi-ribbed rubber sphere on the end to keep it in place in the bladder!
But now the last tube was gone… when we did her catheterisation and then took the catheter out, she would jump off the bed and exclaim, see, now I’m free as a bird!
And a day later she was allowed to come home. My mum and dad were still there, staying in the apartment next to ours, and you have never seen five happier people. I felt complete again. Liam and Molly and I would be sharing one room but we were all together and it would be quiet and private and ours – it felt like heaven.
We had two days of celebration before Mum and Dad went home. We hired a car, pottered, went out to dinner (early, so we could be back by Molly’s still very early bed-time). After Mum and Dad left, we had five more days before our flight, and we moved down to St Kilda for a “holiday”. A strange time, learning to organise our lives in three or four hour blocks, always knowing where the next catheter was, where the next clean private place was. We did our first “out in public” catheterisation standing in a toilet at a café at Hanging Rock, and finally believed that it was all going to be okay.
I’m finishing this account in May, the year after Molly’s operation. We have already been back to Melbourne, in January, for the removal of her stent; it was great to see everyone who had helped us, I was astonished at how many people remembered Molly and came by to say hello. The stent was removed, and a small catheter left in – still working on Paddy’s slow conservative approach, just in case. The catheter, again, seemed to be causing blockage, so Paddy replaced it with a fine guide wire, making sure that he still had access to the ureter from inside the bladder if necessary. Drainage improved, but Molly was experiencing terrible back pain and nausea, and we were terrified that this meant her kidneys were not draining again.
After a few very scary days, Paddy decided that the guide-wire itself was causing the pain. He told the nurses to take it out. Predictably, Molly said no – Mummy will do it. I had no idea how long the wire was, but I dutifully pulled, expecting a few inches to pop out. No – there was more. I pulled again. No – more. More. In the end, the wire inside Molly turned out to be a good sixteen inches long – when I held it straight against her body from its entry point, the end came higher than her head. No wonder she had back pains! From then on it was all improvement, and I even came home early, leaving Molly and Liam to wait for a final test and appointment with Paddy.
Molly has learned to handle her catheter fabulously. She still leaves it in overnight to drain, and catheterises four hourly during the day. She does one every day at school, helped out by a wonderful team of ladies who have been just fabulous. All her relatives know how to help her with her catheters and have secret stashes Just In Case; she’s stayed overnight with grandparents and aunts and everything has been fine. She doesn’t have to go to the toilet seventeen times a day any more and we often discuss, when she’s sitting on her bed draining, how much better it is now.
She still doesn’t have a huge bladder capacity, and what is there is nearly all ureter. But each drain empties her bladder, ureter, and kidneys pretty well, so her kidneys are no longer highly pressurised and should be sustaining a lot less damage. We’ll have to wait and see.
Most importantly, she hasn’t – touch wood – had a single infection since her operation eight months ago. Which is a HUGE change in our lives and hers. She’s gaining weight finally, and has grown taller and stronger quite noticeably – she’s just more well in every way. This term she started Irish dancing classes after school, which would have been unthinkable this time last year, when she often didn’t have the energy to complete a school day. She can stay up later on special occasions without looking like the walking dead the next day, and eats more, and runs about more.
Molly’s Operation (it still has a capital O for me) was an incredibly hard time. But we were so lucky really.
I feel lucky to have found Paddy, who cared so much about what happened to a little girl he’d never met, who was such a great surgeon, and who gave us the confidence of absolute faith in his abilities and his decisions. After six years of Molly’s problems I didn’t think I would ever find someone whose opinions I trusted so absolutely.
We were lucky to have been in such a great hospital, with such good facilities and such fabulous staff (thank you to Julie and all her play room volunteers, and all the wonderful people who brought Molly’s meals, and ice-cream when she felt up to it, and coco-pops without milk!).
We were lucky to have been cared for by a fabulous team of nurses – Kelly, Ingrid, Janesse, Jacqui, Kylie, Esther, Nicole, Megan, Emily, Mark, Carol and Paul – and doctors – Paddy of course, and Natasha, and Naim – and specialists – Stella, we’ll never forget you!
And lucky to have friends and family who said, well, if you have to go to Melbourne for this operation, then we’ll be there too. Thank you Mum and Dad, Willa, Pippa, Hannah, Rachel, and Billy. And all the others, who contributed out of nowhere, who pressed gifts on us (thank you so much Nana) and fundraised for us.
And mostly, we were lucky to have such a brave, resilient, smart little girl to go through this for.