The Mystery Continues

Hi everyone,

I’m happy to report that I feel back to normal after my horrid episode of last week. I heard Mom and Dad saying it was the worst days of their lives, but I fought the odds, once again, and I came out on top. It was a really strange sensation not being able to walk or talk, but miraculously I regained my faculties. Mom and Dad have received some feedback from the doctors but there’s nothing conclusive to report; they don’t know what happened to me and why, and if it will happen again. I guess over the next few days and weeks more info will be forthcoming – I hope. Mom and Dad have revised their alert status from amber to red; which means that a full bag is permanently packed for me ready to go at all times, as well as for them, in addition to the medical info packs that Dad made in readiness to give to whichever medical team will attend to me in an emergency sometime in the future.

My week started really nicely. On Monday we collected Granny as she and I each had doctor’s appointments in the same building; I saw my ENT, who was very happy with my status, and even offered to take out my grommet to coincide with one of my other procedures at some future point to prevent me needing an additional dose of anaesthetic. We were very impressed at his dedication.

Granny had her feet operated on on Tuesday so Mommy left really early in the morning to take her to hospital and be with her. Daddy and I then spent a wonderful day together. After breakfast and some playtime Dad and I headed off to Be Sharp Beetles for music. On arrival I gave teacher Liesel a big hug. Soon the class had started and we were playing with maracas, drumming, singing and rolling on Pilates balls. We ran in a circle waving flags in the air. My flag came off so I ran with the flag pole; Dad chased me to try and fix my flag and that’s when it all went to pot. I screeched with laughter as I ran away from him, and the more he tried to stop me from giggling and being obedient in the class the more I ran away from him and giggled. We were the centre of attention in the class, and fortunately teacher Liesel didn’t mind.

After music Dad took me to the local Wimpy where had some snacks and I played on their jungle gym. It was proving a stunning day with Daddy, and he basically let me do what I wanted to! Back home, I played some more on my jungle gym, and then we both took a nice long snooze. In the afternoon Dad took me with to an appointment, and afterward we bought takeaways. The day was being such a treat. After dinner Dad bathed me and put me to bed, just as Mommy got home. I decided I needed to find out how Granny’s operation went. Mom told us everything went well, and she’d be coming home the next day.

Wednesday was voting day, so it was a public holiday – another full day with Daddy! We chilled around the house during the morning, waiting for Granny to phone us to be collected from hospital. Just before midday Mommy went to collect Granny and decided to have a snooze. When I woke up later in the day I rushed to Granny’s room to give her big hugs and make sure she was comfortable. I was thrilled that she would be staying with us for the next while, but I felt sad for her that she was in pain and needed to walk with a Zimmer Frame, which I later discovered was a source of hours of fun for me!

Late in the afternoon Mom, Dad and I walked to our local polling station at Unika Primary School. It all went very very smoothly and we didn’t even have to wait, as there were no more queues. I even had my thumb inked and cast Daddy’s vote, to participate in the spirit of things.

Most of you already know that Thursday was an awful day for us. Although the day started really nicely with a play date with Hannah, it very quickly deteriorated when I had a brain episode as my head began spinning, I started vomiting, I had nystagmus, I slurred my words and I couldn’t stand or walk anymore. See all the details here.

Friday morning when I woke up I still couldn’t walk, but by about midday I started being able to stand and put weight on my legs again. At 10:00 I had my last meal, as I was going under general anaesthetic later in the day to redo the MRI which had proven unsuccessful the next day. Daddy stayed home with us so that we could all be together. I fell asleep on the way to Morningside Medi Clinic and I stayed sleeping in the car until Dad had finalised my admission and got me checked in. I was very fortunate to have a huge private suite all to myself (actually I had to share it with Mom and Dad).

By now I was awake and pretty miserable to discover I’d woken up, in a hospital, once again. I was starving and just wanted to go home. The radiology department was running about an hour late which meant I went even longer without food than I originally anticipated. Eventually I was called to have a drip put it my left arm. I screamed so hard and loud that people from other wards came to see what was happening. After the drip was put in I waited back in my private suite for about an hour before I finally got called for my MRI. I took about 40 minutes, and sadly, despite my Mom’s protests, she was told to leave while I was put under. I too protested. As much as Mom and Dad explained that Mom had even been in theatre with me, as much as ten times while I was being put under, the un-cooperative anaesthetist wouldn’t hear of it. I wailed, Mom and Dad were furious.

Eventually I fell asleep from the sedative, and after waking up in radiology, alone (again Mom and Dad were forbade to be at my side when I came too), I’d discovered an MRI had been done with contrast, which wasn’t the original plan. In recovery, I screamed out of fear, pain, starvation and confusion. The wonderful nurse (sic) said to me “Big boys don’t cry!”. Fortunately Mom told her off, saying considering the circumstances I was fully entitled to express my feelings. Later, back in my suite another wonderful nurse (sic) did my observations and to take up temperature pointed the hi-tech thermometer between my eyes and said “I just need to shoot you with this gun between the eyes!”

Dad went in search of the radiologist’s report, as we were all still deeply concerned over what had affected me, and if it could recur. It turned out the report would only be ready the next day at 10:00. When Dad came back to the suite with the news we promptly checked ourselves out and went home. We were very very disappointed at the proceedings of the day, as Morningside Medi Clinic had always been so good to us. We made a mental note to never have my MRI’s done here again, and that in future we’ll continue to do them at Unitas where the whole process takes an hour, as opposed to five, and no drips are needed at Unitas as the sedative is administered orally and no admission is required.

We drove home sombre. Needless to say we were very pleased that I seemed to be back to normal again, but we still had no answers. We’d had no feedback from the neurologist regarding the EEG, no MRI report, and no other info either.

Saturday morning we went back to Morningside Medi Clinic to collect my MRI scan and radiologist’s report (which was littered with spelling mistakes). From the report we could deduce that there wasn’t any major or immediate concerns. However we were still no neared to any answers.

The rest of Saturday, as well as Sunday, was spent quietly allowing me to recover and rest.

To all my wonderful readers, fans and supporters, thank you so very much. We received wishes, prayers, thoughts, light and love from near and far, be it by Twitter, Facebook, SMS or email. Cornel arrived on Friday with some goodies for us, and Michelle popped in to say hi and brought us some stunning flowers. Total strangers as well as friends and acquaintances offered to run errands for us, feed our animals as well as Granny (who was still immobile at the time). Claire also arrived at the hospital on Thursday to assist with our household errands. To all of you, thank you so much, you are all so very very wonderful. Thank you also for your continued enquiry into my health throughout the weekend – it’s wonderful to know so many of you care. And for my wonderful new name, Twangel (Twitter Angel), thank you too!

Lots of love,

Jarrod

Photo 1 Climbing Tuesday morning

Photo 2 Love my jungle gym

Photo 3 Casting Daddy’s vote

Photo 4 Daddy and my thumb inked

Photo 5 Welcoming Granny home

Photo 6 Painting my toast with yoghurt

Photo 7 At iPlay on Thursday morning for my play date, before my episode

Photo 8 Despite not being able to use my legs I still insisted on being on my jungle gym

Photo 9 Starting to stand again on Friday afternoon

Photo 10 Waiting in my suite for my MRI, playing iPad

Photo 11 Waiting

Photo 12 Off to MRI finally

Photo 13 Back home having a relaxing bath

Photo 14 Dad and I snoozing

Photo 15 Borrowing Granny’s Zimmer frame

Photo 16 Playing with Tammy

Photo 17 Eating sugar