I Will Survive!

First I was afraid, I was petrified, and so on.

It appears that for the first time, there is light at the end of the tunnel. This last surgery closed off the last remaining fistula on the posterior choroidal artery (back of brain), which is cause for huge celebration. It appears that out of the four fistula that affected me previously, three were successfully closed! The closing of these remaining fistula further have minimised the ‘stealing effect’ that the AVM had on my brain, i.e. preventing much needed oxygen rich blood reaching all of my brain sufficiently. During this last surgery, because a large amount of contrast was used, a better anatomy of my brain could be observed – as a result, and cause for even greater celebration, is the fact that where the offending AVM has been staved off the area is now filled with brain matter. Furthermore, an investigation of my one remaining venous drainage system, revealed that it is no longer in much danger of being lost owing to the closing of the fistulas and the fact that the blood is starting to find different avenues to drain out of my drain once its dispelled the needed oxygen in the brain. I’m not out of the woods yet though, and there remains at least one, possibly two fistula in the anterior choroidal artery (front of brain). This artery is the most risky one to work on in the brain as an error in this can result in my suffering a massive stroke or becoming paralysed. There is a tiny outside chance that the AVM at the base of the Vein of Galen may actually close on its own, through a natural process called stenosis. Originally before my first brain surgery when I was 8 days old, the exit at the vein of Galen was more than 10mm; now it’s down to 2mm, and as a result the is a chance it close on its own.

My recovery was not as easy as previously experienced. I spent most of Tuesday sleeping which my parents were grateful for. The reason for this is that you never really know what the brain is going to do in the hours after surgery. My forcing the blood to go in other directions can lead to a lot of complications. However it would appear that there are none for the moment.

I was extremely sensory and screamed every time someone including my Mom wanted to do something or tend to me. So a lot of the necessary treatments were left out, and only Mom or Dad were allowed near probes or machines or drips that were attached to me. Fortunately they were still quite practised from the early days. I threw up on Mommy a lot and she managed to tolerate the smell until even the medical personnel were not able to stand her any longer. So she went to shower while I was sleeping. Then Dad went to bed and Mom did the long shift till about 2:30 am and then they swapped.

My appetite returned quickly and come breakfast time, Mom disconnected all the machines and let me take a trip around the ICU. My leg still had the pressure bandage on but I managed ok. Every doctor that saw me, was really happy with my condition and they all agreed I could go home. I had a bath to remove the sticky stuff, which was great fun and I caused a great deal of commotion with all the fun I had in the bath (as well as almost flooding the ward). I fell asleep while my folks packed up but Mommy carried me to the car and the next time I woke, I had my own things around me.

At home after a snack we all decided a sleep would help matters a lot, we woke at about 4 pm had dinner and a bath and went straight back to sleep.

Thursday was a quiet day with us just wondering around the house and Mommy ensuring that I got lots of rest. Sadly Daddy had to return to work, but we exchanged messages during the day. I enjoyed playing in the sun with my train and baking some Barney cupcakes. I was really excited when Daddy arrived home and I was beside myself to see him. We had dinner and ate Barney cupcakes together.

Friday we went to see Granny to collect our keys and Mom had to go to the dentist again. So I stayed to keep Gran company. I managed to get in a bit of jungle gym time when we got home and Daddy had a very late meeting so we arranged his and my favourite for dinner, i.e. PIZZA. I hate half an adult pizza I was so hungry.

Come Saturday I started hitting my head against the floor. The pain had set in and Mommy started treating me accordingly. Doctors were put on alert, hospitals were phoned and it was defcon 5 in our house, red lights, thermometers and all the paraphernalia. It was a tough day for me, but it turned out better as I managed to get a lot of rest and do some reading and drawing on Mom and Dad’s bed as a result.

Sunday wasn’t much better and our plans for Barney and the #D500 were changed at the last minute as Mommy felt it was too much for me. Her view is that an adult would take it easy for a week or so following brain surgery and so should I. This might have something to do with the fact that I decided to wake up at 3 am. Meds had a strange effect on me.

I have started calling Daddy, “Daddy Norwin” which we all find very funny, and Mommy I started calling “Mommy Pie”. My language seems to have improved slightly, either that or my confidence in myself. I’ve spent a bit of time singing songs to myself and remembering sequencing and playing memory games. My parents are thrilled and I am hoping the next time Vicky sees me she will think the same as well.

I would just like to thank all of you who phoned, and sent messages of support and well wishing. My parents have always believed that this is what has carried me through.

Love,

Jarrod

Photo 1 Drawing at the hospital post op

Photo 2 Wondering around the ward

Photo 3 Hot relaxing bath post op in the ward

Photo 4 Guess who escaped from the shower

Photo 5 Enjoying the healing rays of the sun

Photo 6 Chooo chooo

Photo 7 Loving the outdoors

Photo 8 Much to Mom’s horror, I climbed to the top of my jungle gym

Photo 9 Playtime!

Photo 10 Housey housey!

Photo 11 Striking a pose on the iPad

Photo 12 Early morning playtime

Photo 13 Drum roll

Photo 14 Getting acrobatic

Photo 15 In a pickle

Photo 16 ‘Til next week