So after lots of waiting, unanswered questions, many unknowns, and heaps and heaps of scans and tests we finally have some solid information. You’ll recall that I underwent a battery of tests and procedures leading up to September in order for my medical team to have empirical information to take to the peer review in Cape Town.
We’ve received the feedback which will give us direction going forward.
- First and foremost, my AVM has been declared as ‘cured’. Yep, you read right, my AVM is defined as medically cured. This essentially means that all the brain surgeries to attempt to close the AVM, either through the Amplatzer, Boston Coils, sterile super-glue and embolization have had the desired outcome. There is no more flow in the AVM and should theoretically not give me any more trouble.
- This means that I do not need to undergo regular scans (MRI or CT) as the AVM is essentially shrivelled up.
- Before we celebrate too much though, we cannot throw caution to the wind – I’m just not lucky enough that way! My left brain represents that of a three-year-old, hence all the struggles I have with learning and ‘deciding’ whether I’m left or right handed. Basically my two brain hemispheres are at odds with each other, indicating that the AVM did cause challenges to my brain developing.
- The insult to the brain from the AVM and various surgeries is noted and have definitely adversely affected the brain. This is also the cause of the continual nightly seizures that I’m experiencing. Dr Aduc has been put in charge of my medication to treat this as well as concentration.
- Because of this, I cannot attend school for the foreseeable future owing to learning and concentration challenges.
- There’s no clear evidence of what caused my complete hearing loss in my right ear, but it is not from the AVM. This means that potentially the hearing in my left ear is ‘safe’ and will remain unaffected.
- It is confirmed my trauma runs very deep, and this will stay with me for a long time still.
Well, that’s it for tonight. Short and to the point but a weight of information.
Me and my Mom and Dad want to say a big big thank you to all the medical staff that worked so hard to treat me and keep me alive to see this day. To all our family and friends, fans of my blog, and anyone that took an interest, near and far, thank you for listening to my challenges and for praying so hard for my survival and recovery.
Lots of love, hugs and kisses,
Photo 1 Ready for my first swim of the season
Photo 2 Hugs with Granny
Photo 3 Trains on Granny’s balcony
Photo 4 Cold cold cold! This is as far as I got for my first swim!
Photo 5 Peek-a-boo
Photo 6 At physio
Photo 7 Been put to work in the garden
Photo 8 Making progress
Photo 9 Train time in my room
Photo 10 Chasing butterflies at Redhill school
Photo 11 Hard at work with Lauren at OT
Photo 12 Time with Aaron
Photo 13 Yes, I’m giving Gracie a ring…
Photo 14 Lego time
Photo 15 Lego Therapy with Elmien
Photo 16 Having fun at Speech Therapy
Photo 17 Playing in Sandton City
Photo 18 Racing cars
Photo 19 I baked Dad a birthday cake, from scratch!
Photo 20 Early morning birthday candles
Photo 21 Yum
Photo 22 Having my haircut
Photo 23 Pulling faces
Photo 24 Dad and I dressed as pirates for Kian’s party
Three tests in three weeks! I did it. First I underwent a 24-hour EEG (followed by time in theatre for Botox in my leg), then I underwent an ABR under sedation, and on Thursday I underwent an angiogram of my brain under general anaesthetic. Its cost Mom and Dad a lot in bribery toys.
Monday was a pretty quiet day, playing at home and doing some school work. Tuesday we headed off to Pretoria for my speech therapy with Elmien, which is both a treat and work, we started a new technique, using Lego to get me to use both expressive and listening techniques. What a treat that was. Wednesday, to get my mind off stuff, Mom took me to Yeesh for a nice long play. Despite being tired, I managed to stay awake until well after midnight. It’s my PTSD that’s kicked in in full force, and no-one really understands nor believes how powerful it is. I can fight sleep and even sedatives, as my fear is so deeply ingrained. It’s been hell for Mom and Dad, and I’m really sorry, but I often don’t even know what I’m doing when I have an episode, and most of which happen during the night.
Thursday morning we had to leave really early, and because of my late antics the night before, Mom and Dad battled to get me up. I’m not sure how they even managed to wake up – we were all exhausted and zombie like. Ours was the first car in the Family and Baby parking at Unitas – that’s how early it was. I was in good spirits despite being incredibly thirsty, hungry and tired. Because I was undergoing general anaesthetic I was Nil-Per-Mouth, which is a medical term for STARVE.
After being admitted, we head off to the children’s ward, where I had spent many many days previously. I managed pretty well with getting in my theatre scrubs, which were an endless source of humour for me and my folks. I entertained the nurses and doctors, and was in good form.
Driving to theatre on my bed was a nightmare for the nurses and porters, as I insisted on semi-standing/sitting and commenting on everything and everyone we passed. When there was oncoming traffic (aka another gurney or some unsuspecting soul in a wheelchair) I’d shout “Brace for impact!” and “We’re going to crash!”. Once we stopped and my bed was mistakenly rolled up against the wall, in easy reach of light switches – you guessed it, I turned all the lights off.
Arriving at theatre I noticed a distinct relief in the eyes of my porters and nurses, and they were more than glad to hand me over to the theatre staff. It was lots of hellos and hugs and we were all reunited in the theatre reception. My 8-year celebrity status definitely preceded me, and I eventually started saying to people “How do you know my name?”
Eventually it was crunch time and it was time to go into theatre. Now fear had taken over and I was inconsolable. I demanded that Mom AND Dad go into theatre today so arrangements were very quickly made and Mom and Dad were given scrubs. In theatre I fought the gas like mad – it’s always a long debate between me and Mom leading up to these situations as to whether I’ll take a drip or gas – today I opted for gas. Pretty soon the fight left my body as the gas took effect. I remember Mom and Dad holding me tight and hugging me before I was lifted onto the table.
Hours later I woke up really woozy, starving and thirsty. In true form Mom and Dad had prepped and there were cold drinks and food ready. I eat everything I could lay my hands on. And then when lunch arrived I ate all of that too! I was back to my usual self just after noon, after having rested. Now it was time to start moving about. Mom and the nurse removed the drip from my arm, and Dad led me carefully for a walk around the ward. First I needed to wee, and little did Dad and I know the string on my theatre shorts were undone – next minute my shorts were around my ankles, in the middle of the passage, and Dad and I could do nothing but giggle hilariously.
After we ‘recovered’ from that, I started walking and skipping around the passages. Dad was a little concerned about the pressure I was putting on my leg, as we hadn’t seen the surgeon yet. I tried in vain to comply.
By mid-afternoon Dr Winter, beaming from ear-to-ear, arrived with his MacBook to show us the scans and discharge us. He’d been in theatre the entire day so wasn’t in a position to give us much info, but what he was thrilled about was the clarity of the angiogram – he was now able to pour over these scans, and compare them to previous ones, and then give us solid feedback and a game-plan. Also, all this info was going into the peer-review in September. Watch this space and we will reveal the results when they come to hand.
Back home I was full of beans while Mom and Dad were shattered! I finally could have the bath I’d been wanting all day. While bathing Mom gingerly removed the massive pressure bandage over my groin where the surgeon got access to my veins to get to my brain. It was EXTREMELY painfully coming off. Dad walked in asked how I was, I said “I feel like saying a bad word!”, to which Dad said I was actually entitled to. I didn’t ask twice, and let out a string of “Sh!t, sh!t, sh!t, sh!t” We all laughed!
Afterward we all got an early evening. Friday morning I was given the choice of going to Lauren, and I said, “Absolutely!”. I had a good session as it was an anything you want to do session, and back home we took it really easy, all of us still exhausted.
The weekend was quiet, with me, Mom and Gran doing some shopping on Saturday, and then Sunday, being a perfect summer’s day we just enjoyed the pleasant and warm weather.
Photo 1 Some intense Lego playing
Photo 2 Playing with an old friend
Photo 3 Speech therapy with Elmien
Photo 4 Ending off my speech for the day
Photo 5 Hard at play at Yeesh
Photo 6 Fun with new friends
Photo 7 Construction work
Photo 8 Painting
Photo 9 Back home there was a parcel waiting for me…..
Photo 10 Angry Birds GO! Telepods from Sandy, Brad and the girls! I am THRILLED!
Photo 11 So happy!!!!
Photo 12 Immediately got down to using them
Photo 13 Being brave, waiting to go to theatre
Photo 14 Oooo, a zip line!
Photo 15 Some serious hand washing
Photo 16 Cutest plumber’s butt, EVER
Photo 17 Just Jay-Bee
Photo 18 Driving to theatre
Photo 19 Gas…..
Photo 20 On the table
Photo 21 This is the theatre where I’ve had all my brain surgeries and embolizations
Photo 22 Fast asleep after theatre
Photo 23 Awake and being brave
Photo 24 Dashing about the ward!
Photo 25 “Dad we can escape that way!”
Photo 26 Driving home, taking selfies, which I then posted to Mom’s Facebook page!
Photo 27 OT with Lauren
Photo 28 Playing in Toy Kingdom
Photo 29 Thinking during some serious train playing
You’ll recall from my last post that I was scheduled to undergo three tests before the peer review in September, but I had gotten so sick last weekend that I may not be able to undergo the ABR last Monday. Well, fortunately, my illness subsided. Turns out I picked up a really nasty bug from theatre at Sunninghill Hospital. By Monday I was a lot better so Mom and Dad decided to proceed.
I took my sedative and over an hour later I was asleep in Yvonne’s office, with more probes on my head and this time some in my ear. The ABR results are not great – my right ear has no hearing whatsoever. Two possible reasons are that the cochlea has ‘died’ and the second that the cochlea nerve to the brain has malfunctioned. If it is the first, we go back to our biggest fear ever – the steal effect. Essentially this means that the AVM in my brain is ‘stealing’ important blood and oxygen from other parts of my head, this time the victim was the cochlea. We won’t know this for certain, until the angiogram is conducted on Thursday.
As if getting this bad news wasn’t enough, my PTSD decided to rear its head in a big ugly way this week. We all suspect it’s as a result of having the EEG last week, being in theatre and then being sedated again on Monday. All these things trigger bad hospital memories in me and my syndrome takes over. Mom and Dad had a few hectic nights as a result, where I was up and unmanageable to 3am in the morning!
Some exciting news on Friday was that Nina, Jaco, Gené and Kate popped in for an extremely quick visit. It’s been 2 ½ years since Nina moved to New York for her work, and only the second time we’ve seen her since. It was so nice to catch up, even for a little bit.
Well, that’s it for now. Please keep me in your thoughts and prayers on Thursday as I undergo the angiogram. Needless to say it is highly risky, and the results of the test may not be favourable – so much seems to be going wrong at the moment that it’s difficult for us to stay positive.
Video 1 – Stationery Delivery (click here)
Photo 1 After I took my sedatives I decided to don a helmet in case I fell on my head
Photo 2 Asleep in Yvonne’s lab
Photo 3 Wired up. Yet again
Photo 4 Back home where I did a marathon sleep
Photo 5 Doing some playing and planning
Photo 6 Minecraft time
Photo 7 Selfie!
Photo 8 Tennis with Mischka
Photo 9 Physio with Kim
Photo 10 Tree climbing
Photo 11 Hard at play
Mom, Dad and I headed off to Sunninghill Hospital on Thursday morning, to settle in for a 24-hour EEG. It was mostly uneventful, and incredibly boring for me. After being admitted and accommodated in the EEG Lab, about 30 probes were attached to my head, each with gooey conducting gel. Each one was carefully placed in its respective spot, identified by the rainbow of colours on the cables. Once they were in place, either taped down or simply lodged in my hair with gel, my head was wrapped in a bandage – and that was me, captive until the next morning. The cables allowed me about half a metre of freedom – it was terrible.
Fortunately Mom and Dad spoiled me with a new Avengers Lego, which Dad and I built for the afternoon. I watched some stuff on the iPad, played a little, ate a little, but mostly wanted the time to pass as quickly as possible. After we all had dinner Mom and I settled down for the night. There was barely enough space for me and Mom, let alone Dad, so he headed home. I had a good night’s rest; Mom not so much. When she woke me at 6 am to remove the probes, she looked exhausted and blurry eyed.
Friday morning I was starving but couldn’t eat or drink, as I was scheduled for theatre later in the day. Dad arrived back and it wasn’t long after that the anaesthetist arrived. She took my vitals and we discussed the general anaesthetic – we’d settled on gas, and a pre-med of dromicum. Apparently I was hilarious on the dormicum, but it took so long for me to get into theatre that it basically wore off in 30 minutes. People don’t realise that my PTSD and trauma is cell-deep and my body is so wired that drugs actually have very little effect on me. I can actually fight sedative, because of my fear.
I finally went into theatre and was gassed – not a great experience and Dr Aduc administered Botox to my leg.
After theatre back at the EEG Lab I was moved to another ward, and eventually discharged. It was lunchtime by the time we were home again on Friday. Mom crashed for a few hours while Dad and I kept each other company. I was well rested and in top form – Mom and Dad not so much….
In the afternoon we headed off to Sharon’s Dad’s place to collect her to take her to the airport, as she was flying back to Oz after a whirlwind 7-day visit. Her passport had been renewed that morning, just in time – few people believe that passport renewals in South Africa take only 3 to 4 days! Her flight was delayed, which was fortunate as the traffic to the airport was a mare. I started dozing off in the car, much to Mom and Dad’s dismay, as that meant no sleep in the evening! So we all started singing and playing games in the car to keep me alert – it worked.
Check-in was very quick and then we all had a dinner of toasted chicken-mayonnaise sandwiches – apparently delicacy in Australia! We bid Sharon farewell and pulled funny faces at her through the glass at passport control!
Back home we finally all passed out.
Saturday we rested. Granny came for a visit and I announced I needed sushi – a good sign that I was ok again. Dad was sent off sushi take-aways and we gobbled them up like we hadn’t eaten in weeks. Mom snoozed for the afternoon, so Dad and I busied ourselves making tracks for mine carts in Minecraft.
I woke up very very sick Sunday morning. Throwing up and with a really bad toxic headache. The rest of the day was spent with me trying to relax in many hot baths, throwing up a lot, suffering a major headache, and eventually I spotted Mom and Dad getting out the go-packs which meant one thing – back to hospital. Fortunately I managed to start keeping down some valoid and liquids so the hospital visit was put on ice, for now. I noticed Mom didn’t put away the go-packs, and there was some definite whispering and planning happening amongst the folk.
What this does create, and hence tonight’s blog title, is a big question mark over my ABR test tomorrow. Recall from last week’s blog I’m running three sets of tests in the next three weeks to meet the neurosurgeon peer timeline in September – an EEG (followed by Botox), an ABR and then an angiogram. Not an easy thing having to schedule so many different tests, theatres, specialists, anaesthetists and then still coordinate all the results in time. And we literally only have this chance until the next peer review which will only be next year again, and are generally scheduled (or announced to us) at very short notice.
So my rest tonight and my vitals tomorrow morning will determine if we can proceed with the ABR. Please keep me in your thoughts and prayers so that I’m well enough to undergo tomorrow’s tests.
Video 1 Jarrod’s escape plan (while on dormicum) – click here
Video 2 Jarrod’s entertaining us on the gurney to theatre, under the influence of dormicum – click here
Video 3 Watch the cow in the mine cart in Minecraft we created – click here
Photo 1 My bribe present for being brave
Photo 2 Fooling around in reception
Photo 3 My last meal of freedom 🙂
Photo 4 Getting probed!
Photo 5 Lots more to go….
Photo 6 Intense building in progress
Photo 7 Confined to barracks
Photo 8 Boredom…..
Photo 9 Entertaining everyone on the way to theatre
Photo 10 Me. On dormicum!
Photo 11 Finally back home on Friday, giving Missy some love
Photo 12 Last thing Sharon saw before leaving SA!
Photo 13 At the airplane viewing deck at OR Thambo
Photo 14 Being brave on Sunday morning, trying not to throw-up
Photo 15 Dad taking care of me
Sorry for being so quiet the last few weeks. At first there wasn’t much going on – had lots of play dates, I was sick with pre-bronchial pneumonia which took forever to go away, we had rain and thunderstorms (yes, in the middle of winter) and after some really cold days we’re back into t-shirts. Our nation voted in the local government elections with promising results. Last week, Sharon my Godmother from Australia arrived in South Africa for a short but sad visit – her Mom had passed away.
The next few weeks for me are going to be very challenging – I start this week with a full overnight EEG, so Mom and I are staying over at the Sunninghill Hospital on Thursday night. Friday morning its then straight into theatre to have Botox administered into my leg.
As if that isn’t enough, I’m having an ABR – auditory brainstem response test to determine why I have lost all hearing in my right ear. The ABR needs to be done with me asleep – at first we were hoping to do it in theatre after my Botox, but the theatre cannot accommodate me so I get to go under twice! Fortunately, for the second time, the ABR will be with sedative and not general anaesthetic.
Last but not least, I’m having an angiogram done in the last week of August. Mom, Dad and I meet with Doctor Winter last month to review my latest MRIs and discuss next steps and a plan going forward. We’ve arrived at a point that the MRIs aren’t telling us anything – there are too many metal artefacts in my head to allow for a clear enough image. Through the angiogram, which does carry risk, we will better be able to see what is happening in my brain. A further advantage is that in the second week of September all the surgeons are having a peer review of my case, and they’ll have a bunch of current info to work from, such as the EEG results, the ABR and the angiogram. So we’re hoping for some direction and next steps then.
Until then, please enjoy the photos……
Photo 1 Ninja Turtle zip line
Photo 2 Lunch with Dad
Photo 3 Helping with dinner
Photo 4 Tea party with Mom
Photo 5 Just Jay-Bee
Photo 6 Playing with Mikey
Photo 7 Aaron and I having a playdate
Photo 8 Taking a selfie
Photo 9 At physio
Photo 10 OT with Lauren
Photo 11 Puzzle time
Photo 12 Captain America
Photo 13 Chilling
Photo 14 Jumping with Mikey and Gracie
Photo 15 Scrubbing black feet!
Photo 16 Me and Mikey at The Spur
Photo 17 The three of us!
Photo 18 Cat attack
Photo 19 My new t-shirt
Photo 20 Milkshake time
Photo 21 Doing some maths
Photo 22 Love swinging
Photo 23 Hammy and me reading a magazine in the doctor’s waiting room
Photo 24 An audio test with Yvonne
Photo 25 An epic battle
Photo 26 DIY
Photo 27 ‘Cap’
Photo 28 Giving Missy kisses
Photo 29 Missy giving me kisses
Photo 30 Dad and I after voting!
Photo 31 Driving…
Photo 32 Excavating for dino fossils
Photo 33 Good progress
Photo 34 Cranky helping with some school work