On the 11th of December we flew to Melbourne for Isla's first EUA after an 8-week break. We have continued to request that Isla is last on the list and we have an early flight over in the morning so Isla isn’t fasting while we are on the plane. This is still working well and the flight went pretty smoothly.
I called Sandra when we arrived at the hospital and we met with her to attempt another vision test on Isla (as was discussed during our last visit). This vision assessment went quite well. Isla was able to correctly identify several pictures from some distance. Sandra was pleased with the result. We assume most of this vision is coming from her left eye alone, but her overall vision seems quite good. It is still difficult to accurately assess how much vision she has in her right eye. Sandra mentioned she at least has some light perception because her pupil dilates. Sandra was able to cover Isla’s left eye for a little while and Isla’s right eye would wander, suggesting she is trying to find a little bit of retina that does work to be able to see. So she may still have a tiny bit of vision in that eye.
After meeting with Sandra we went to the zoo for a couple of hours, as we had accidentally left the stroller in Garreth’s Mum’s car at the airport. Going for a walk with the stroller is the only way we can get Isla to have any sleep before we go in for her EUA. You can hire strollers at the zoo, so we went there, hired a stroller and walked around for a while hoping that Isla might have a bit of a sleep there. She did have a short nap there, which meant Garreth and I could have some lunch without her seeing us eating while she was fasting.
We headed back to the hospital and checked Isla in for her 2pm admission. We saw one of the families we hadn’t seen for some time as they have been stretched out to less frequent visits. It was good to see them and hear that they had been doing well after their son’s enucleation (eye removal) almost 1 year ago.
Isla went into theatre at almost 5pm. Again no pre-med was used and this worked well.
The ophthalmologist came to speak with us after the procedure and reported that everything was still looking stable. There were no new tumours but we still can’t be 100% sure that the main tumour is dead and we will just have to keep a close eye on it every 2 months. He said you would expect to see it regrow in about 6-12 months if it is going to. If she does keep her right eye and there is any chance of the tumour starting to regrow she will have to keep getting it checked for a few years, however when she is about 5 this can be done awake and in Adelaide. Her right eye still looks quite sick and ischemic and that probably wont change, but if it doesn’t bother her (cause pain) that shouldn’t be a problem.
We then went to sit with Isla in recovery and waited for her to wake up. She had the same nurse in recovery as she has had the last few times and one of her other regular nurses was with the patient next to us, so we are really starting to feel like part of the furniture in there! Isla took a little while to wake up and the nurse eventually tickled her nose to wake her. She woke up a little grumpy, but she was fine. She had something to eat and drink and was happy again pretty quickly.
We pre-ordered our uber eats dinner in recovery as it was getting quite late and we left stage 2 recovery by around 7pm. Isla enjoyed her pasta for dinner and went down to bed really well.
Shared kitchen - Care By Parent - Royal Children's Hospital
We were all tucked up in bed by 9pm, which is probably the earliest we have been in bed on a Melbourne trip for a while. Isla slept perfectly all night, so we COULD have all had a great sleep until the alarm woke us up at 5am. However.... I started feeling rubbish after we went to bed and tossed and turned and couldn’t get comfortable until about midnight, when I got up and vomited. I was then up about every 1-1.5hrs vomiting for the rest of the night! I’m pretty sure I got food poisoning from the pre prepared fried chicken I had at the zoo. I remember at the time thinking it wasn’t as hot as I expected it to be as I could eat it straight away and now and in hindsight I realise that pre cooked chicken sitting in a bain-marie at the zoo probably wasn’t the best choice for lunch .
I still felt awful in the morning and was worried I would be sick on the way to the airport. I couldn’t find vomit bags anywhere in the care by parent unit of the hospital and all of the wards were locked until 7am. I managed to find a ward that I could get into so I ducked in there and grabbed some sick bags to take with me. The taxi ride to the airport was awful and I vomited again just as we were pulling up at the airport.
I was dreading the flight and we mentioned to the guy who checked us in that I wasn’t feeling well to see if we could keep the seat next to us free. He said the plane was full and suggested not mentioning to anyone that I was sick as they may have to get GPs involved and I could get kicked off the plane. So I had to sit on the plane feeling awful and pretend not to be sick! It was the worst 60 minutes of my life. Thank god it was only Melbourne to Adelaide. I almost made the whole flight without throwing up, but I vomited again just as we landed in Adelaide, right when everyone was standing up and gathering their bags so EVERYONE could see me.
I still felt awful for a couple of days once we returned home, so whether it was food poisoning or gastro I’m not 100% sure. But thank god we had Garreth’s parents at our house when we arrived home as I was completely out of action for at least a day and a half and Garreth’s mum was a HUGE help. Isla's next EUA is in 8 weeks time, so we will be back to Melbourne in February.
© Alison Davey 2021