Rolling the dice

Miss Z having an EEG to monitor her seizure activity earlier this year

Miss Z having an EEG to monitor her seizure activity earlier this year

Yesterday Miss Z and I met with a new doctor – a neurologist who specialises in the ketogenic diet.

What is the ketogenic diet you ask? In short, it is a special high-fat, low-to-no carbohydrate diet that is sometimes used to treat uncontrolled seizures.

Normally, your body breaks down carbohydrates to glucose to fuel the brain, but when there are not enough carbohydrates, it begins to break down fat reserves, which produce a by-product called ketones. The brain then uses ketones for energy, and for some reason (that no one really understands), this use of ketones  by the brain can reduce seizures, or eve result in a child becoming seizure-free.

Sounds great, doesn’t it? Why have we suffered through four years of seizures when we could just be stuffing Miss Z full of fat and enjoying freedom from fits?

Well, like everything in life, it isn’t guaranteed. The doctor reckons that only around half of the kids who go on the diet experience an improvement. And less than half of that half become completely seizure-free.

And Miss Z is so complex that there is a lot to take into consideration. For example, how will the diet affect her bone density? Since she aspirates her formula, will a formula very high in fat be even more damaging to her lungs? And what affect will it have on her kidneys? Her anti-epileptic medication has kidney damage as a potential side effect, and so does her infusion treatment for osteoporosis. So far she hasn’t shown any side effects, but do we want to put her kidneys under even more stress?

At the end of the day, no one knows how Miss Z would respond to the ketogenic diet. It might be the best thing for her. It might make her seizure-free, which could have the knock-on effects of helping her to swallow better (and reducing the risk of aspiration and chest infections) and be more active and mobile (strengthening her bones and reducing the risk of more fractures). A change in diet might mean she vomits less – although it could also make her vomit more. It might mean that she can be weaned off some of her current anti-seizure medications.

Or it could mean that we try it and fail and the ketogenic diet gets addeded to our growing list of things that didn’t help.

Or, her vomiting could prevent us from maintaining the right level of ketones in her system, which would result in the diet failing to take effect.

And these are just concerns that I’ve come up with so far…

To paraphrase Donald Rumsfeld, there are known unknowns and unknown unknowns to putting Miss Z on the diet. It is a real roll of the dice.

Still, I think it is worth taking a risk – a cautious, calculated risk – if we could get Miss Z seizure-free, or even seizure-reduced. It could have huge benefits not only to her health, but to her development and hence to her quality of life.

This is my hope.

The diet isn’t easy – it requires a lot of commitment, organisation and effort from me, QB and everyone else who has a role in caring for Miss Z. She will need to be fed very specific amounts at specific times and montiored closely to ensure that her body remains in ketosis. This will be a big change for us as we tend to be fairly relaxed about Miss Z’s feeding routine at the moment.

So, tomorrow the testing starts to make sure that there are no underlying issues that will prevent her from going on the diet. And the week after that, I will keep a food diary for her – including keeping track of how much she vomits in a day. Then the neurologist and dietician draw up a plan, with the expectation that we start the diet in January/February.

She will be closely monitored on the diet for three months, after which the doctor and dietician will review her to decide if she is benefiting from it. If she has shown improvement, she will carry on with the diet, if she hasn’t, they will wean her off it.

Its a roll of the dice, but fingers crossed it will be worth it.

Just another manic Friday

Fridays are exhausting

Fridays are exhausting

Mondays around our house aren’t popular, but they tend to be orderly and calm. Not at all like the end of the week, which tend to be balanced on the edge of chaos.

This past Friday was no exception. I managed to get me up, dressed and fed. And Vegemite up, dressed in her school uniform, and fed. I’d made her lunch and packed her school bag the night before, so that was all organised, too.

But Miss Z wasn’t quite as prepared. She had swum at school the day before and I’d rinsed and hung up her swim nappy and swimsuit to dry so that she’d be ready for hydrotherapy on Friday morning. But QB had moved them and I had to scramble around looking for them. I finally found them, buried in a heap of dirty laundry – a bit smelly, but I hoped no one would notice since she’d be wearing them in the water…

Miss Z started her day, as she often does, with a lot of coughing and a big vomit to clear all the secretions that pool overnight. I dealt with it and managed to get her dressed and give her all her medications. Both girls were ready to go! Success!

Everything was running according to plan. Miss Z watched cartoons whilst Vegemite brushed her teeth and put on her shoes and I loaded the car with Vegemite’s school bag, Miss Z’s swim bag, the ‘spotty bag’ (which we take everywhere with us and includes spare nappies, extra clothes, sick bags, muslins and emergency meds) the feed pump and formula, and the special needs stroller. And I put the dog in his crate, since we were going to be out for the morning.

But my plans changed when I picked up Miss Z to head downstairs to the car. She was stinky. Really, really stinky. Whilst I was marvelling in my moment of logistical success, she had been producing a poo in her nappy.

It was too late to change her – it would have made Vegemite late for school. So, I abandoned the idea of taking Miss Z to Vegemite’s school assembly before hydrotherapy and instead dumped Vegemite in front of the school and returned home (the opposite direction to hydrotherapy) to get Miss Z cleaned up.

On the drive home, I realised I was feeling really, really tired. So when I got home, I put water on for coffee. That should be straightforward, except that earlier in the week our aged kettle had started blowing fuses every time we switched it on. QB being rather particular when it comes to kettles used to make his tea would not countenance the idea of buying a new one at Target – instead he has ordered a very specific one (from overseas no less) online. So, when I want tea or coffee at the moment, I have to boil a pan of water on the stove. It is only an extra 5 minutes, but then again – its an extra five minutes of my life every time I want a cup of tea or coffee!

(In case you’re wondering why I didn’t just stop by a coffee shop and get a take away, it is because it is just too difficult with Miss Z. I can’t leave her in the car, which means I have to get the stroller out of the car, put it together, get her out of the car and into the stroller, try to squeeze the stroller into the cafe to order, then return to the car, lift Miss Z back into her carseat, fasten her in, take apart the stroller, lift both parts back into the boot and then head off again (usually sweating heavily by this time) – hopefully remembering that I’d put the cup of coffee on the roof of the car during all the lifting and positioning (the number of times I’ve gone through this and then driven off with the coffee on the roof is embarrassing).

Anyway, back at home, I leave the water to boil, let the dog out, and change Miss Z (I’ll spare you the details of that particularly joyous activity). By this time the water has boiled and I can make my coffee, put it in a travel mug, put the dog back in his crate, and carry Miss Z back downstairs.

It is now 8.45am and I’m finally ready to depart for hydrotherapy. The trip there was pretty uneventful – apart from slow traffic – and we arrived in time for me to sign Miss Z in and get her changed before the start of her session – success!

Hydrotherapy gives me 45 minutes of sitting poolside and watching Miss Z and her brilliant hydrotherapist – and also doing a bit of people-watching around the pool.

Miss Z hates getting out of the warm water of the pool, so it is a scramble once she’s out to get her dry and dressed before she really cracks it. I also have to change the dressing on her stoma (the hole where her feeding tube enters her tummy), which has become water-logged. She also has a sore on her heel where she’s kicked her foot against the side of her stroller, so I re-bandage that as well. Once she’s dressed, I head out to pay for the session and chat with the receptionist about scheduling for next year.

Then its back to the car, where I hook Miss Z up to her feed for a late breakfast and head home. Miss Z is fast asleep within minutes – swimming really wears her out. When we get home, I steal five minutes in the car with the air conditioning, music and sleeping child, and catch up on my email and Facebook on my phone. Then Miss Z wakes up and we head inside.

Miss Z obviously didn’t get enough sleep on the way home as she is very grumpy. I try her in her beanbag and on the floor, watching cartoons and listening to music. Getting food and without food. Nothing makes her happy. I make my lunch in between rushing back to her to stop her from scratching her ears. The other night she scratched her ears in bed and I didn’t notice. When I went to check on her later in the evening, her bed looked like a scene from Dexter.

Miss Z finally gets her way and we end up snuggling on the sofa (despite the heat here in Brisbane). She immediately falls asleep. I start to nod off as well. Then the doorbell rings, which set off the dog (he likes to think he is a guard dog even though he’d let in anyone who offered to scratch his belly).

It is Miss Z’s speech therapist and physiotherapist. They’re her two favourite therapists (most of the time). They’ve also brought a student. I leave Miss Z sleeping and let them in. They come upstairs and say hello to her, but she refuses to open her eyes – this is a classic Miss Z move. So, I give them an update on the latest Z developments – she’s being reviewed for suitablility for the ketogenic diet on Monday, we are trialing a raised bathtub, we finally have a gastroenterology appointment. Everyone heads to the bathroom to inspect the raised bathtub.

When we return, Miss Z has her eyes open, but immediately closes them when she sees that her therapists are still here, and are now planning to make her “do things”. She feigns sleep for awhile longer, but eventually has to practice kneeling, rolling, and holding her head up.

I discuss the fact that Miss Z is out-growing her stroller faster than expected with the physio. I discuss ways to move forward with Miss Z’s communication with the speechie. The student – who has been working with Miss Z all term – chats with her and gets rewarded with eye contact. Ben the dog tries to make it all about him by presenting his belly to be scratched, but he’s easily distracted by a frozen banana.

When the therapists leave, Miss Z is ready to nod off again, but it is time to collect Vegemite from school, so I load her back in the car and we head off. We do “big girl pick-up” which means we pull up in the car and Vegemite jumps in, rather than getting Miss Z and her stroller out again. When she gets in, Vegemite excitedly informs me that she was awarded Student of the Week – and that I missed her getting it because we’d had to return home for an emergency nappy change. Ho hum.

Its Friday, which usually means that if Vegemite did well in swimming lessons that week, she gets a treat from MacDonald’s. She didn’t have swimming this week, but considering she got Student of the Week, we head to MacDonald’s anyway. Once upon a time, I was one of those parents that didn’t want my child to even know what MacDonald’s was… Those days are gone. We still don’t eat meals there, but their smoothies, shakes and slushies are an incredibly handy motivator for Vegemite. And it has a drive-thru. Since Miss Z arrived on the scene, I’ve become a big fan of drive-thrus!

After getting Vegemite’s reward, we head home. Vegemite immediately switches on the television, but when I notice that she’s about to watch an episode of an extremelly annoying show on Disney channel that she’s already seen at least twenty times in the past 2 days (at least that’s how it feels), I order the television off, and she entertains herself with some toys instead.

Miss Z is still grumpy and no amount of cuddling or repositioning can make her happy. She gets another feed and I jolly her along while tidying up the kitchen, bringing in the laundry and playing fetch with the dog (who is full of beans after a fairly boring day for him). I manage NOT to throw any dog toys onto the roof of our house or into the neighbour’s garden, which is pretty good considering my track record…

Then its dinner for Vegemite and bathtime for both girls. With the new raised bathtub, both girls can take baths in different bathtubs in the same bathroom at the same time. So we do it, because we can. I’m still getting the hang of the new bathtub and somehow manage to flood part of the floor, but otherwise I’m calling it a success since I ended up with two clean girls and no one drowned.

As I was drying Miss Z, our cat Juno appeared outside the bathroom door. She was making her yowling noise, which always signals that she has brought us a ‘gift’. It turned out to be a baby rat – dead. Vegemite wailed that the rat was cute and that Juno was cruel and awful. I scooped it up and threw the little corpse in the bushes, hoping the cat wouldn’t return with it again in a few minutes…

After that it was simply a case of changing Miss Z’s feeding tube dressing, re-bandaging her heel, brushing her hair and tying it up (she HATES this), brushing her teeth without making her vomit, putting on her pajamas, attaching her feeding tube, handing her over to QB for a quick cuddle while I dash downstairs to put a new drop cloth on her bed (it goes under her head and can be replaced during the night if she does a lot of dribbling or coughs up secretions). Then Miss Z (who is tired and cranky by this time, so we’re skip the bedtime story) gets positioned in bed (on her side to minimise the risk of choking, pillow between her legs to prevent pressure sores and ensure good hip support, pillow behind her back to prevent her from rolling onto her back and choking, and bunny between arms for comfort) and I put one of her fibre-optic lights next to the bed to help settle her. Covers pulled up, lights turned off, music turned on – and that’s Miss Z in bed – success!

Half an hour or so later, Vegemite also heads off to bed (after eating most of the naan bread from the curry that QB has ordered for us). At which point I pour myself a glass of wine and collapse on the sofa. After all, I’ve got at least an hour before I need to start on Miss Z’s nighttime meds and overnight feed…

Bring on Monday, I say!

My daughter, my full time job

Note: This post was written in mid-September, but I forgot to post it. We are home from the hospital and Miss Z has been discharged from Hospital in the Home, so all is well (touch wood). Although it is a bit out of date, I thought it was worthwhile to publish it since it gives a good update on a few of the challenges we’ve been facing medically.

After the week of beautifully aware and happy Miss Z, things went downhill again. She started to get sleepy. She started to have diarrhea. She started to be miserable.

And her breathing became erratic. Her neurologist became concerned during a routine appointment and we ended up in the Emergency Department. Luckily the x-rays didn’t show signs of pneumonia and the chest physio managed to shift a lot of goo off her lungs, so we were able to go home. But she still wasn’t happy and a few days later we were back – and this time they admitted us to the hospital.

It turned out that Miss Z had parainfluenza B. This strain of flu hasn’t been very common in Queensland for a few years now, so it wasn’t included in the flu vaccine this year (which Miss Z received) – and then there was an outbreak of it in Brisbane.

The flu caused breathing problems and Miss Z was on oxygen for a few days. The fact that Miss Z didn’t rip the nasal prongs out immediately was a sign of just how poorly she was feeling.

Our paediatrician was ambitious and decided that since Miss Z was already an in-patient, she would try to organise for her to have a PICC line inserted and get a 2-week course of antibiotics that Paeds and Respiratory had been discussing since her previous hospital admission. The idea is to blast Miss Z’s chest with some hard-core antibiotics in order to kill off as many of the nasties in her chest as possible. It isn’t a cure, but they hope it will get her good for awhile and stop these constant hospital admissions.

A PICC (peripherally inserted central catheter) is a type of central line that goes in through the upper arm and into a major blood vessel next to the heart. It was decided that Miss Z needed a PICC because the veins in her arms, hands and feet are too small and fragile to maintain an IV cannula for two weeks.

There were a few questions around whether she would be approved for general anaesthetic (GA) needed to insert the PICC. She helped the decision-making process by coming off oxygen the day before the procedure and maintaining good oxygen saturation on her own.  In the end, they decided to “twilight” her (a light GA) and everything went very smoothly.

The best part of the antibiotic plan is that they have organised for us to be under the care of the Hospital in the Home. So, every day we have a nurse visit to check Miss Z’s line and administer the antibiotics and a physio visit twice a day to do chest physiotherapy to try to shift some of the secretions off her lungs.

Hospital in the Home is a fantastic programme and one that is perfect for us. To say that Miss Z hates being in the hospital is an understatement. She detests it. She is miserable there. And with her dodgy chest, she is always at risk of picking up another virus or infection.

Being in the hospital doesn’t provide me with any type of break either. Either QB or I need to be with Miss Z at all times when she’s in hospital. Someone needs to be watching out for seizures and aspiration. The nurses provide medical care, but they don’t have the time and don’t know Miss Z well enough to provide for all her everyday needs. So, when Miss Z is in hospital, so am I – which means I’m unable to work (our local park has free public WiFi but the brand new state of the art hospital does not), look after Vegemite, or sleep in my own bed.

So, having medical care at home is fantastic. But it is also intense. We have three medical professionals visiting each day, in addition to all of the care that I provide for Miss Z (feeds, meds, dressing changes, etc). So, we’re essentially house-bound, apart from school drop off and pick-up. Still, I’d rather be house-bound than hospital-bound!

Happy to be home

Happy to be home

The fourth anniversary

Miss Z, just home from the hospital 4 years ago today

Miss Z, just home from the hospital 4 years ago today

It was four years ago this week that Miss Z had her first seizure.

She was six months old and we had only just found out there was something “wrong”. But we had no idea what that meant or how “wrong” would manifest itself until that first seizure.

Looking back on that day, it is amazing to think how naive I was. The nanny came to my office door (I was working from home), carrying Miss Z and saying “something is wrong”. I held Miss Z and had no idea what was wrong – although clearly something was not right. She was breathing in a strange, rhythmic pattern, her eyes were fixed to one side, and she was twitching. It never occurred to me that it was a seizure. I’d never seen a seizure.

After watching Miss Z for a moment, I stated the glaringly obvious: she needed a doctor. The nanny asked if I thought we should take her to the GP or the hospital. After considering for a moment, I said “I think we should call an ambulance”. Then the nanny and I both paused. Neither of us had ever called an ambulance for anything before. It felt almost like we were doing something wrong by calling. After all, surely Miss Z wasn’t so unwell that she needed an ambulance? Weren’t they for car crashes and people keeling over from heart attacks? Making that call felt like an over-reaction.

Of course, making that call also saved Miss Z’s life, though we didn’t know it at the time.

(I now use that story as a parable to explain to anyone new to caring for Miss Z why they should never hesitate to call an ambulance if they think something is wrong.)

Once the ambulance arrived, we were blue-lighted to the hospital. I sat in front with the driver while two paramedics worked on Miss Z in the back. QB was waiting for us at Emergency. We were all ushered into the “resus room”. At one point there were nearly 20 doctors and nurses in the room. Miss Z stopped breathing twice and they decided to intubate her.

I left the room. QB didn’t – he told me later (much later) that he didn’t leave because he thought she was going to die.

But here’s the thing – it never occurred to me that she might die. I was scared and upset, but I never thought something tragic would happen to her. It wasn’t motherly intuition, I didn’t have some sort of deep maternal connection that told me things would be OK. It was naiveté. I just didn’t think something that awful could happen to me or my daughter. After all, she’d been perfectly fine yesterday…

After two days on a respirator in PICU, Miss Z was able to breathe on her own and we were moved to a regular ward for monitoring. On my birthday – four years ago today – we were finally given the all clear to go home.

The doctors suggested that the seizure may have simply been triggered by a fever and (although I had my doubts that she had actually had a fever) I agreed it must be the case. It never occurred to me that epilepsy might be one of the things that was “wrong” with Miss Z. It took several more seizures in the following weeks and months for me to realise that.

And I initially didn’t want her on anti-seizure medication – I didn’t want drugs messing with the balance in her brain. It took some time to accept that the drugs were correcting the balance in her brain, not messing with it. And that these drugs were going to keep her healthy… and alive.

Since her first seizure more or less coincided with my birthday (and a fairly landmark birthday at that), looking back I realise just how much things have changed and how much more I understand and accept now than I did those four years ago. It has been a long, difficult and stressful road since then – and we’ve never known what was around the corner. My vocabulary has evolved from “something wrong” to lengthy discussions on gastrostomy tubes, developmental regression, bisphosphonates and bronchiectasis. I’ve gone from staring blankly at my child, having no idea what to do, to someone who this morning calmly managed a 4 minute seizure in the middle of our nebuliser and chest physio routine.

I wish I could say the experiences of four years ago have made me a better, stronger person, but I don’t really believe that. I’ve simply become better informed and more experienced. I’m not as naive as I once was. But I am better equipped and able to manage whatever the next four years may bring.

School holidays

While most of my friends and family in the US and UK have been sending their children off for a new school year, here in Australia, it has been the spring school holiday. That means one more term until the long Christmas/summer break (I know, I can’t get used to Christmas being in summer either).

I love school holidays: the extra hour of sleep in the morning, no school lunches to prepare, freedom from homework and spelling lists and home readers (no, I don’t personally do these things, but I do have to supervise them, which is even less fun), and greater flexibility on bedtimes.

But most of all, I just enjoy spending time with the girls. No pressure, nowhere we have to be and nothing we have to do – just hanging out together. At the risk of sounding like a boastful mother, they are two fantastic little girls, and there is nothing better than spending time with them – especially when they’re together. The only thing better than enjoying their company is to watch them enjoying each other’s company. Watching Miss Z tickle Vegemite by rubbing her face on her tummy has to be the funniest thing I’ve ever seen.

Our first week, Miss Z was still under the care of Hospital in the Home, so we weren’t able to get out and about much. So, over the weekend Vegemite and I went shopping for a bunch of arts and crafts supplies and spent the week making stuff like decorated t-shirts, dream catchers and beaded name plates for the girls’ bedroom doors. We also managed to visit Hummingbird House, present them with the money raised by Vegemite’s class, and get a tour of the construction site that will soon become Queensland’s first children’s hospice. It was a productive week.

The second week, I knew Vegemite would be getting bored hanging out with her mum and little sister, so I made sure she had a few activities planned. She had an early morning swim clinic every day, attended a drama workshop where she participated in making a music video, and did two days of art classes with one of her best friends. And this was fun, too, because I love to hear about all the things she’s done and the people she’s met.

The school holiday was also an opportunity for me to make up for lost time. I haven’t been able to spend a lot of time with Vegemite lately because Miss Z has been in the hospital so much, so it was good to give her my attention – while I tried very hard not to spoil her…

It also gave me an opportunity to repay some of the many, many favours that the mothers of some of Vegemite’s friends have done for me over the past few months. We would not be able to survive without the kindness of a few people who have stepped in when a Z emergency has arisen. They have no idea how invaluable their help is in these situations. Knowing that there is someone to collect Vegemite from school, cheer for her at a sports carnival, or feed her breakfast and take her to school, is a huge weight off our shoulders. And it is so much more fun for Vegemite than before and after school care…

Holidays – especially when Miss Z is healthy – are a great time to repay a few debts by taking their kids off their hands. And it is a good opportunity for Vegemite’s friends to see Miss Z at home – where she is happiest – because I really want Vegemite’s friends to feel comfortable around Miss Z. So, we organised playdates (and even a sleepover) during the two weeks.

It didn’t always work as well as I’d like it to, of course. I had a car-full of kids to take to art class when the sat-nav sent me in the wrong direction and Miss Z started vomiting in the backseat. Vegemite, who I’d seated next to Miss Z for precisely that reason, managed to nobly catch everything in a sick bag like it was no big deal. And I somehow managed to navigate the car to the right place, unload all the children (including Miss Z) and shepherd them all up a flight of stairs (no disabled access in sight) before the class started. Plus, I made up for the rocky trip to class by buying everyone an ice cream when I picked them up (added benefit – I got one, too).

Even with the occasional mishap, the school holiday was just what we all needed. School re-started with a bang today, making me long for those peaceful two weeks as I tried to mop the vomit out of Miss Z’s hair whilst repeating “Vegemite, brush your teeth. I mean it, we need to leave in TWO MINUTES” like a mantra.

How many weeks until the next school holiday?

So very far from being ready to leave in 2 minutes...

So very far from being ready to leave in 2 minutes…