Alex seems to have a knack of requiring medical attention on significant days – My birthday, Jenny’s birthday, New years eve, Christmas eve, Christmas day etc etc. Well, we just had Valentines day didn’t we. Guess where we ended up.
Alex woke up on Saturday morning and his behaviour and symptoms were an almost perfect copy of Christmas eve morning. Slurred speech, disorientation and distress. A few quick calls to the Neurosurgery registrar and the Michael Rice center confirmed what we already knew – head in to hospital.
Phil did the hard yards this time, taking Alex in and calming him through ED, admission, X-rays and another MRI. The X-ray showed the shunt itself was intact and undamaged – a good first step since it reduced the risk of needing more surgery – then the MRI confirmed there was no blockage in the shunt or the catheters, and that the CSF (cerebrospinal fluid) level was low. The problem, as it was before Christmas, was the shunt was removing to much fluid causing pressure on the brain where it was no longer properly supported.
Upside: no surgery required
Downside: The neurosurgery team had to adjust the shunt and required Alex (and Phil) to stay in hospital a second night for observation.
A relatively big upside and fairly minor downside – though poor Phil got very little sleep two nights running – and Alex came home on Monday, having satisfactorily adjusted to the higher pressure.
Alex’s original shunt was set to 80 (we aren’t sure what units of measurement are used to describe this, we are just hoping it’s not PSI) when the new shunt was put in it was set to 100, and has now been adjusted to 110.
Hopefully this won’t happen again for a while – though it’s probably going to reappear if Alex has a growth spurt – so fingers crossed for an uneventful few months at least until the next MRI in June.
Thankyou all for your messages, love, hospital visits and support, they really do help so much.
I normally do the grocery shopping on a Friday – hardly a fascinating start to a blog post, but bear with me. Friday being Christmas I had to go the day before, and in anticipation of all the last minute Christmas shoppers I was up and at the shops at 6am. Though quite a few other people had the same idea I was done and heading home by 7.30, I had a few treats for Christmas morning – croissants and the makings for eggnog, and was mentally planning a blog update along the lines of ‘we are in a really good place, everything is great, Happy Christmas’ as I headed home to unpack. The scene I arrived to was anything but the normal early morning chaos you usually find at our house. Alex was stumbling about clearly disoriented and extremely upset, nothing Phil could do would calm him so I resorted to an old standby – cuddles with blankie and Mamma.
He did start to calm a little, but he wouldn’t answer any of our questions, seemingly unable to tell us what was wrong, or if he was in pain. Even the simple questions like ‘what’s your favourite colour’ didn’t get a coherent answer. As he calmed I could make out the sounds and inflections you get when speaking, but the ‘words’ coming out were nonsense. Thoroughly alarmed now we rang the Michael Rice Center, told them what was going on, given the symptoms we were leaning towards an issue with his shunt, the nurse Phil spoke to agreed and said “Call an ambulance”. Not really words you want to hear on Christmas eve, or any other time really.
Phil rang 000 and when he was put through to the dispatcher it turned out to be a friend and fellow SES member Sally. Talk about Adelaide moment. Alex was calmer than he had been but by no means his usual happy self and when the ambulance officers arrived and tried to do his obs he wouldn’t have a bar of it. Jenny capitalised on their lack of concentration on her to cheerfully investigate the defib gear they had brought in with them, though fortunately she was unable to turn it on. Quickly grabbing necessary bits and pieces we headed for the ambulance only to find that Alex REALLY didn’t want to be strapped into the bed inside. The only place he would even consider sitting still was my lap, so with the seat belt around both of us off we went.
Arriving in Triage at WCH means you go through into one of the resuscitation rooms until they assess you and find a spot for you in E.D. Alex had calmed down enough that he let me put him down on a bed, and once he was horizontal almost immediately went to sleep. This lent further weight to the idea that there was something wrong with his shunt, since when you lie down the pressure of the fluid in your head is reduced, and in essence the shunt is a pressure valve. The big relief was that after he had spent some time lying down Alex was able to speak normally again, although it was quite slurred.
Paperwork all done and in an E.D bay, the unsurprising decision was reached to do a C.T scan. Unfortunately Alex was still really edgy and wouldn’t lie still, so he was given a sedative. C.T successfully taken, we went back to E.D until a bed could be found in one of the wards. While we were waiting the nurses accessed Alex’s port, the unfortunate part about a sedative, for Alex at least, is when it starts to wear off he gets really cranky, and the even more unfortunate part was that this happened right as he was being accessed. Alex is small for his age and currently tips the scales at 15kg and it took 3 of us to hold him down while a fourth nurse accessed his port. We then had to hang on to him for another few minutes as he was hell bent on deaccessing himself. All the effort wore him out and he went back to sleep, and when he woke he was not at all bothered by his ‘tails’.
The C.T scan didn’t provide any definitive answers so Alex was sent for an MRI. He had been sleepy for most of the time he hadn’t been really cranky for, but when I told him we were going to smell colours he went into happy overdrive. Introducing anyone who would listen to his friends – puppy, blankie, and Elmo – though his speech was still noticeably slurry it was close to normal. He went in at 3pm and was out about 2 hours later.
At 6pm the nurse came by to tell us that the neurosurgeon wanted x-rays as well, so for the third time that day we went down to radiology. By this time Alex was his usual self and we were able to persuade him to lie still for the x-rays – thank goodness no sedatives required!
The interim conclusion reached from looking at the scans was that the shunt was in fact not blocked, but working to well – overdraining. This causes the brain to sink lower in the skull and puts pressure on the lower parts of the brain and the brain stem, hence the problems Alex had with his speech. It’s not as big an emergency as the build up of pressure is (Hydrocephalus) but still causes significant issues. The good news, which was somewhat lost amid the shunt drama was that the MRI result showed “no disease progression” which is the best result we could hope for. The bad news for us was that the consultant neurosurgeon was going to look at the scans and form a plan of action – in the morning.
So Alex and I spent Christmas morning in the hospital, all the plans for the day up in the air. Dr Amal came to see us at 10am and confirmed the diagnosis of overdraining, the reason it seems was simply that Alex had grown, and the extra few centimeters were enough to disturb the pressure balance, the solution is just as simple, remove the old shunt and insert an programable shunt, which can be adjusted to match Alex’s growth. Then Dr Amal gave us the best Christmas present ever. Since overdraining, while a serious problem, isn’t as dangerous as the shunt being blocked, as long as Alex spent a reasonable amount of time lying down, we could go home for the rest of Christmas. Alex is scheduled for the shunt replacement surgery first thing Tuesday morning and will be in hospital for a few days to recover, but all things being well he should be home for new years.
So we ended up with (mainly) the Christmas we had planned, spending time with both our families, being grateful for all the little things you take for granted until the prospect of having them taken away looms before you.
It’s been quite a year all things considered, let’s hope the next one is a bit more peaceful!
Wishing you all a happy and healthy 2016
Jo
This post is way overdue, I wanted to do it some time ago but got caught up with a few other priorities like study and work but here goes.
Anyone who knows me knows I LOVE the V8 Supercars… The racing is tight, the cars look and sound awesome and the drivers are so accessible to everyone. I’ve wanted to get a ride in one of those monsters for a long time, way back since Lowndes was driving for HRT and they were still racing at Mallala in SA. Through the Little Heroes Foundation, Jo and I were invited to the Travel Manager annual conference at Adelaide Oval way back in August. I spoke about our journey with Alex; the lows, the pain and fear that we have been through and also showed off his bravery beads.
Much to my surprise (ok.. Excitement!) as we were chatting to Chris McDermott from Little Heroes, another of the invited guests arrived and it was Nick Percat.
He was seated on the same table as Jo and I were for dinner and after spending a couple of hour with him, I’ve gotta tell you for a really young guy competing in a top end sport; he’s got his head screwed on straight and clearly hasn’t forgotten where he’s come from. He really is a top bloke, who during dinner was texting someone from the team and arranged at very short notice for a 2 lap joyride at Sandown. To sweeten the pot, he’s offered a pair of race gloves to the winner as well. At $500 (on the Lucas Dumbrell Motorsport website) for me to get something like this is barely a pipe dream but hey, I’m sitting and having dinner with Nick Percat not something your average Supercar fan can say.
In the end Chris actually won, I thought that was kind of cool for Chris to buy it and have something for him to enjoy. It wasn’t until the 15th of September when I saw a message pop up from Chris asking if I was free on the 28th to fly to Melbourne and have the drive with Nick that I thought any more of it. I walked into my boss’ office and begged for the day off which was given (I probably would have been sick otherwise heheh).
Because of the timing of my ride first thing in the morning, I needed to fly to Melbourne on the Sunday which was fine since it meant I got to catch up with Scott a fellow writer and friend from Ausdroid who accommodated me for the night; thanks again Scott. The big day arrived and Scott kindly drove me out to the track and came in for a bit of a nosey.
I must admit to walk into this view, standing in the Sandown Raceway Pits got me a bit excited.
Just watching, listening, taking it all in and then I realised… They were about to do motor starts for the morning and my adrenaline levels started to build.
Once Nick and his team mate Tim had gone out and done a lap or two to warm up they started doing rides, I was only second on the list for Nicks car and given the pole lap at this years race was a 1:08.71 and race lap times were in the high 1:09 range I wasn’t going to have to wait long. After the first rides happened my chariot arrived.
So I got to live a dream on September and have a ride in a V8 Supercar around one of the my favourite tracks. There’s fast sections, some really tricky sections and when it all comes together looks amazing. What really blew me away on the approach to turn 1 was the lack of vision for the driver, I was sitting higher in the car than he does and my vision was restricted at best. That all seemed irrelevant when Nick asked “You ready”, a thumbs up and a very memorable experience began.
For anyone that’s unfamiliar with the Sandown track here’s a look around the track that Garth Tander did before this years race.
On TV and from outside the car the track looks quite wide, open and friendly but when you take a 90 degree turn at roughly 100kph they narrow out pretty quickly. All I can say is wow, the forces that go through your body are indescribable, banging up over the curbs is normal for these guys but it’s quite a surprise how high the wheels go when its your first time in the car but the biggest surprise is the brakes. The braking forces inside the car are mind blowing, I don’t know what G Forces we’re talking about but its astounding; I’m told the driver puts about 100kg of pressure on the pedal at every single corner; so that’s a 100kg, single leg press at every braking marker. For the first few turns it felt like we were braking waaay too late, yet still managed to stop and make the turn.
Turn 5 disappeared; so quickly we came up on the section of track that I was looking forward to the turn 6, 7, 8 and 9 complex. Go from 6th gear, back down to about 185kph from what I understand and through a really fast left, right, left combo braking along the way then stand on the brakes for another left and on towards the top end of the circuit. That bit alone was worth the trip, I could feel the adrenaline surge hit me after that. Seriously… what a ride and I was 3/4 of the way through the first lap.
As I got in the car, I handed my phone to someone and asked them to film the car going down the front straight. I got told that they thought they could hear me screaming “Yeeeeeee Haaaaaaa” as the car went past; you tell me?
On the second lap I decided to sit back and just soak it up. I must have had the biggest grin on my face for the whole time, I loved every second of it. On the second lap down the main straight Nick waved at me and pointed to the gear lever, was he serious? Yep, he was… I got to pull the gears on a V8 supercar! You need to whack a fair bit of force through that to pull the gears and I think I timed them pretty well on the shift lights; got the thumbs up from Nick on the way up the gears so I can’t have done too badly.
My grin widened as we came to turn 6 again, round the top end and into the pits. The total time I was in the car with the motor running was a shade under 3 minutes but an experience I’ll never forget. As I got out the car, I was so adrenaline filled my fingers were literally tingling and that stupid grin on my face seemed cemented in place. I can’t thank Little Heroes Foundation enough for sending me over or the team who made me feel so welcome on the day. Nick gave me an awesome ride and delivered on the promise of some race gloves (Thanks and I’ll find you at Clipsal to sign them Nick!) NB. this is not normal on the ride days, ref. the auction earlier in the post.
There was some more activities out the back of the circuit where guests on the day were able to drive Holden vehicles around various slalom style circuits. That was great fun, I think the theory was 1 or 2 turns then move on… I may have spend about 25 minutes in the Commodore Storm flogging around which just made the day that bit more fun.
If you’re thinking about going for a hotlap (presuming the funds are there, it’s not cheap sadly) stop thinking and do it. I would do it again in a heartbeat if the opportunity arises, what an experience and what a ride.
It’s been a while since we posted anything about Alex and the reason for that is there’s little to report. He’s going really well; he’s happy, healthy, playing and doing “normal” things for a 6 year old boy. We’re just enjoying the time with him and getting on with life.
Thanks so much to everyone who continues to contact us about his health and ours, the support we have had over the last few years has been beyond anything we could have ever asked of our family and friends. You guys are all amazing support and have played a huge role in getting us through the really tough times, time to enjoy some good times.
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