End of a long, hard day

Sandro, Jo, Alex and Sofia rocked up with not one but two metre-long pizzas! The two tables we had put together in the cafe were barely long enough.




They were sensational and I can believe they're the best outside Italy.




Sofia's leaving for Japan at 6:30 tomorrow morning so when we said goodbye, she and Jessye agreed to meet up in Kyoto and maybe Tokyo.

Back in the room, we finished the evening with Jessye tracking down her passport in Melbourne and then a game of up the river. Sophie and I came back to the Travelodge and Jessye's staying with Rosie. Rosie has been headache-free most of the day and it's hard to believe she's going to relive this past week. But if stoic is what it takes, then she'll sail through because she has that in bucketfuls along with an inspiring grace under pressure. She's to be ready by about 7:30am for surgery around 9:00.

Michael's chat

We had just got up from our cafe table (Rosie in a wheelchair since she needs to not put too much pressure on her angiogram site) on our way back to the room to await the amigos when they came looking for us in the cafe. The four of us sat down at a table with Michael while Miika and David hovered behind us. Michael spoke to Rosie and told her the angiogram showed another little area of AVM only a few mm from the part they'd removed. The vessels in this area looked normal in the old scans and in the surgery but when the blood could no longer go through the main AVM area because it had been closed off, it became apparent that these vessels were abnormal too. They were now taking the unnaturally fast blood flow that had been going through the old AVM and so showed their true colours. It's quite hard to explain - I'm just getting the hang of it all after hours of consultations and looking at scans over the years.

Michael told Rosie he'd be going into this operation with the same attitude as last time. It would be a mistake for him to think that he had to make sure this was the last surgery no matter what. If there was doubt or any decision to be made during surgery, he would still decide cautiously because that is the safest for Rosie. Although the chance of having to do a third operation was very small, it was not an impossibility. He said that the one person in his 630 AVMs who had to have 3 operations had an AVM with some similarities to Rosie.

He was still reassuring, said they would fix it and said that the theatre nurses and everybody involved was asking how Rosie was doing and they were all rooting for her.

We're back in the room playing, doing the jigsaw etc and waiting for the Costantinos to arrive with pizzas. Sandro claims their favourite joint has the best pizzas outside Italy and when Rosie knew she had to have another op tomorrow, she requested a pizza party tonight for dinner.

Surprise!

A delivery for Rosie just arrived from Sandra in Melbourne causing much excitement.


It was very well timed while Rosie was counting down the minutes till she can get up.


Chocolates, nail lacquer and a cupcake cookbook. Thank you, Sandra!

Distraction

Rosie's wanting non-stop up the river to stave off headache and pass the time more quickly.


Jessye's DJ and the soundtrack is Stevie Wonder.

Lying flat in the ward

Rosie has to lie flat on her back for four hours after the angio and she's bored stiff. The white stickers on her head are for navigation purposes in the CT and tomorrow's surgery.


She thought she might be able to play up the river lying down with some verbal notification. Sophie and I obliged. Jessye came back from seeing a Melbourne friend for coffee and is feeding Rosie a scone because her good left arm has a cannula in the inner elbow and doesn't reach her mouth easily.

Disappointing news

Michael Morgan just gave me the very disappointing news that there is still residual AVM there and he would like to go back in tomorrow morning first thing. We had been warned of the possibility but it's of course a big blow. We both went in to Rosie who was still on the angiography table and he told her. She accepted the news calmly and they have now taken her into the CT room for some scans which will be used during tomorrow's surgery.

The second time isn't quite as physically brutal because things haven't properly healed yet but of course there is still the original risk of the surgery itself deep in the thalamus. Michael said that there were obviously veins which he thought were normal which turned out to be abnormal. The CT will focus on trying to fine tune their identification. He apologised for putting me and all of us through it again and warned that in one case out of his 620 or so AVMs he even had to go in a third time. Safety is always the priority and therefore erring on the conservative side during surgery is a good thing. We have to tell ourselves that but it's a big blow to think that Rosie has to go through all that again.

She looks very calm and when I saw her just before CT she said she was fine and it's not as bad the second time, is it? She said she's getting used to this place and she knows Jessye and Sophie won't be able to stay as long as she's here now and that she'll be all alone stuck with a snorer!

Gone in

I asked if I could watch Rosie's angiogram from somewhere but they have a policy of saying no because they think family members are going to freak out. They don't realise I have a very high tolerance for and even fascination with gory details!

Anyway, after I asked twice, I gave up gracefully and came back to the room where I've started to tackle all the red pieces nobody else could face previously.


Rosie went in at 9:34 and they told me to come back in 45 minutes. She accepted the offer of a sedative since she's a little bit apprehensive about her first angiogram without general anaesthetic. She was also concerned about getting a headache because she will be lying down flat for the first time since surgery. Luckily, because this is a very specific angiogram to check up on the AVM area rather than a full diagnostic one, it's quite short. The doctor estimated 40 minutes.

Day 7, waiting

Back in the gown and on the move to angiography. Scheduled for 9am.