Panic Stations

I had a very interesting discussion with Daddy on Monday morning while he was shaving. I’m very curious about his work, and for weeks I’ve been asking ‘When I’m a little older, can I come to work with you?’ Of course Daddy said this is fine. ‘Where is your work?’, to which Daddy says ‘In the middle of town’ Now however I’m beginning to have second thoughts, so I thought I’d better enquire a bit more about his work.

So I asked Dad, ‘What do you do at work?’ It did surprise me that Daddy had to think about it. He finally answered ‘I go to meetings’. Inevitably my next question was ‘What’s a meeting?’ Again Daddy had a long think, and then explained that it’s where people sit around, talk a lot, and sometimes make decisions. Yes, my next question was ‘What’s a decision?’

Daddy took a while to consider this question too, and finally he said it was taking in lots of information and doing something with it. Satisfied I said ‘When I’m a little older can I come to work with you and make decisions?’ Dad sighed, ‘Yes Jarrod.’

Sadly the day turned haywire after that; en route to work Dad got a call from Lippert. The medical team had already met at 7am in the morning to discuss my case. From my MRI scan on Friday it is confirmed that there is a fistula in the pericallosal on the left side of my brain. There was also panic about the intracranial pressure on my optic discs that may result in blindness in the next decade or so.

This lead to all of us being very sad and angry. Why, after preparing so well for surgery in May was it suddenly postponed to November, and now that we, of our own accord, had an MRI done, there was panic again. Mom immediately mobilised and an appointment was set up with an ophthalmologist for the next day who would check for this pressure, called papilledema.

The highlight of my day on Monday was when Ryan called me on Mom’s mobile phone and the two of us had a nice long chat. He told me he had pinkeye and I told him we were having pizzas.

It was a sombre evening and we all silently chomped on our pizzas.

Daddy had a really early meeting on Tuesday morning, so I hardly saw him before his meeting-decision-making-efforts (aka work). However in the afternoon, when I got home from school, Daddy was waiting for us. We all headed off to Lenasia in the far south of Jo’burg to see my ophthalmologist. He practices from a number of suites during the week, and Tuesday’s was Lenasia. Given the panic of the call the day before we took the first appointment available.

It was my first time to ‘Lens’ and I absolutely loved it. My ophthalmologist was super awesome and even let me fiddle with his optic equipment. After a thorough examination he declared that my optic discs were in order and there wasn’t any evidence of intracranial pressure on my optic discs. This was a huge relief.

In the afternoon Dad spent some more time up the oak tree trying to coax Shatzi down. It was now three days that she’d been up there, and we were at an absolute loss as to what to do. At the same time we’re desperately trying to find a new home for Lucy Lui, the Jack Russell we’re fostering, as she’s responsible for chasing Shatzi up the tree.

Wednesday I screamed at being left at school in the morning. I really don’t like being at school; or more precisely, I don’t like the separation from Mom. Fortunately Teacher B soothes me and pretty soon I calm down. I had Be-Sharp Beetles after school and was really hoping to sing Happy Birthday to Tata Madiba for his 94^th birthday but we never got around to it. I sang to him myself then!

In the afternoon Dad spent some time, again, in the oak tree trying to coax Shatzi down. We were starting to get extremely stressed as pretty soon we thought she would die in the tree. The neighbours have also all started complaining about Lucy Lui’s incessant barking, night and day, so Mom bought an anti-bark collar. It worked for about five minutes and then Lucy killed the batteries.

That evening, Ryan and I decided (because Daddy had taught me all about decision making) that speaking to each other via mobile phones was so mid 2000’s and we now wanted to facetime. So using Dad’s iPad, and Ryan using his Dad’s iPad, we Skyped each other. It was such fun to not only talk to Ryan but also see him at the same time. We made faces at each other, tried to share our food with each other (Ryan was eating biltong and I really wanted some). It was really great. I love technology.

I had SEMAS maths on Thursday after school, and back at home in the afternoon there was a great deal of commotion in the back garden. Helen, Kyle’s Mommy, had put us in touch with some tree fellers that arrived to retrieve Shatzi from the tree. Four big guys went up the tree, and after lots of trapping, coaxing, chasing and shouting, Shatzi eventually came down the tree. She hid away for the rest of the afternoon but eventually made an appearance, albeit that there was a little less of her. Five days of no food had definitely helped her waistline.

Friday we stayed home after school. We were all still feeling very sombre from the news about my MRI earlier in the week. Also Ryan was still sick so I couldn’t even meet up with him for some fun. For some reason I was up until 1am on Friday evening, much to Mom’s despair.

Saturday Granny came to visit and we all headed off to OrangoTangos for some play and lunch. It was such fun. I got Granny to play soccer with me and Dad took me on the bumper cars.

Sunday was also very quiet. Dad and I played in the morning on the Wii, and then we built with my Legos. In the afternoon I helped Mom in the garden for a while and then Dad and I played with my Thomas TrackMaster set. Eventually it was so hectic on the tracks I piped up ‘It’s a busy day in Sodor!’ Speaking of Thomas and Friends, Dad has loaded three full feature Thomas and Friends films on my iPad. I’ve spent a good deal of time watching those too.

On the matter of next steps and the outcomes of my MRI last week, Mom and Dad have managed to piece together the following info from all the little puzzle pieces offered us by the various role-players. The fistula in the pericallosal must be closed. The risks associated with this is that the pericallosal manages standing, speech and sight etc. Additionally, through further surgery access to femoral veins or arteries in my groin will be difficult, as these have been utilised so often already. This means that the next surgery will start off with an angio in my groin area for a surgeon to make an incision in my groin, and then get access to the femoral arteries (called access under sight).

There is evidence that the left matter of my brain is slightly less than the right, but not a distinct pathology. There is good contralateral networking in the brain, so if something should go wrong in the next surgery, the functions I lose could be accommodated by other parts of my brain.

Fortunately there is evidence of drainage from brain, for as you all know I’ve completely lost the drainage on the right hand side of my brain. And needless to say if I lose the left hand side drainage it would really be very bad news. Mom and Dad however are still very concerned about the drainage, as it could get occluded.

Mom has also been very concerned about my heart, as the AVM from birth has put great pressure on my heart, and as you all recall my little heart failed four times already. A sonar of my heart has been suggested, but it is expected that there’s nothing too serious going on with my heart.

It seems the steal effect, which steals oxygen from my brain causing further brain damage, has diminished owing to the closure of the previous fistulas.

So I’m clearly not out of danger yet, and more surgery is needed. The question now is when?

Love,

Jarrod

Photo 1 Chatting to Ryan on the phone

Photo 2 Me?

Photo 3 Eye check!

Photo 4 Shatzi being captured in the tree

Photo 5 Sliding at OrangoTangos

Photo 6 Upside-down giggles

Photo 7 Building a rocket

Photo 8 Pensive

Photo 9 Jumping-castle time

Photo 10 Goalie Granny!

Photo 11 Striker!

Photo 12 Charging the goals

Photo 13 Setting up for practice

Photo 14 SHOOT!!!!

Photo 15 Time to leave, with Spiderman eggs and Dad’s shoes

Photo 16 Ice-cream cone and Angry Birds for the win!

Photo 17 A busy day at Sodor!