On Wednesday the 16th of October we travelled to Melbourne for Isla’s 22nd Examination Under Anaesthetic. We were last on the list again so that Isla didn’t have to fast on the plane. This worked well for us, and since we were staying overnight anyway, it would be more beneficial for other families to get out of the hospital earlier to get home sooner. So as long as it made sense for medical/treatment reasons, Sandra was happy to accomodate.
We arrived at the hospital in the morning and didn’t need to be admitted until the afternoon. We went for a walk while Isla had a sleep in her stroller and then she had a play in the park once she woke up. We went to the hospital playground where one of us kept Isla amused while the other sneakily scoffed some lunch while Isla was fasting. Just before we were about to head inside to be admitted, Isla went down the big slide with Garreth one last time and hurt her ankle quite badly on the way down. Her leg came outside of Garreth’s and the sole of her shoe gripped the edge of the slide and bent her ankle back as they were sliding down. She screamed when it happened and did have a decent cry, but it didn’t last too long. However she wouldn’t weight bear on that foot at all.
We had to be admitted for her EUA, so we decided we would go check in for that and let them know what had happened and see if we could pop down to emergency while we were waiting for theatre. The eye team tried to organise x-rays and a consult with an orthopedic registrar before Isla was anaesthetised for her EUA. The nurses made some phone calls and arranged for us to head down to medical imaging to have some xrays done. Unfortunately, in the haste of it all, there had been a bit of miscommunication and only a foot xray had been requested. We were pretty sure it wasn’t her foot that was sore. We weren’t even sure if it was her ankle, or further up her leg or knee. Anyway, her foot was xrayed and that looked fine.
We went back upstairs after the X-ray to await her EUA and hopefully see an orthopedic registrar before she went in. The time came for her to go in for her EUA and we hadn’t seen anyone about her ankle. We didn’t have a pre med this time, which we were pretty happy about after last time. We told the anaesthetist about our experience last time and he thought it was probably a little early to be trying a pre med with Isla anyway. He mentioned they may want to try it again in the future, but can play around with the different drugs and dosages, so as to hopefully have a better experience than we did last time. Garreth took Isla into theatre and she went off to sleep quite well.
There had also been a mix up this trip and we somehow ended up with no accommodation booked for the night. So in between preparing for her EUA, getting xrays done and worrying about whether or not her ankle was broken, we had to run around and make phone calls back and forth to find a room for the night. Just before Isla went in to theatre we received a call to say they had found a room for us in the emergency accommodation area, which is right near care by parent where we normally stay.
About an hour or so after Isla went in, the eye team came out to speak with us and had some pretty great news this month. There were no new tumours and they were almost convinced that her main tumour is now dead. They’re not 100% certain and will just need to keep watching it for a few months to make sure it doesn’t start growing again, but they said it looks a bit more transparent than last month, which is a good sign.
They’re still very keen to try and find out how much vision Isla has in her right eye. We all think it is very very little, if any at all. We will carry on having eye tests in Adelaide and practicing her pictures for those tests. We also need to practice covering both her eyes to get her used to that. Isla certainly doesn’t like it when you cover her good eye and will just push your hand away. However, it will even be helpful to practice covering her bad eye, so she gets used to the feeling of having something over her eye and then work towards being able to cover each eye for vision tests. We also mentioned to Sandra that we think she is more likely to co-operate with her for a vision test because she knows her and is comfortable with her. We suggested meeting in the morning before the EUA list if she was in the hospital and free, as we always have time to kill in the morning. Sandra thought that was a great idea and she will be around in the morning next time, so we will try that.
We also spoke about Isla’s wandering eye. I believe if she does have some vision in her right eye that could help correct her esotropia. We might be able to patch her good eye to help strengthen the muscles in bad eye. I think it’s unlikely that she will have enough vision for that, but we’ll see. They can also surgically center her eye, but that might not last. I think this will be difficult for Isla too, as it is not that her eye is ALWAYS a little turned in, it varies. Sometimes it looks fine; sometimes (particularly when she’s tired or has just woken up) it is really bad. They think there should definitely be something that can be done to improve it, but they wouldn’t do that until she is about to start school.
The main issue now is that the right eye is so damaged from the treatment. It is quite ischemic (poor blood supply) as the arteries were damaged by the intra-arterial chemo. They said some blood vessels have regrown since last month, so the eye is attempting to repair itself, but whether or not it will be able to regain a healthy blood supply to the tissues of the eye is unknown and we will just have to wait and see. She may have issues with this down the track (could be years) and her eye could build up pressure and become painful, or lose pressure and shrink and become uncomfortable or painful. If this happens they may need to remove her eye and replace it with a prosthetic simply because it will look better and be more comfortable for Isla.
They’re happy that it has now been 5 months since a new tumour was found and as Isla is nearly 2, the risk or more tumours is getting less and less. If her main tumour does start to regrow, we know that it will only be very slowly, so they are happy to stretch our Melbourne trips out to 8 weekly instead of 4!
We will go to Melbourne every 2 months for at least 6 months and then may be able to stretch it out even more if all is still going well.
The eye team also mentioned that they had a play around with her ankle while she was asleep and couldn’t feel anything major going on there, but we would wait to see the ortho reg.
We were called around to meet Isla in recovery once she was there and awake. She didn’t take long to wake up and get back to her normal self, much better than last time with the pre med! We did end up hanging around in recovery for quite a while before an orthopedic registrar came to assess Isla’s leg. The registrar eventually came and had reviewed Isla’s foot xray. She assessed her leg and ankle and was happy that it was just a sprain or bruise, but suggested seeing our GP if she still wasn’t walking after a couple of days.
We eventually got settled into our room just after 7pm and had some dinner and got Isla down to bed. We were up early the next morning for our taxi to the airport and flight back to Adelaide.
Isla still wasn’t walking a couple of days later. We had an appointment with the oncologist on Friday, so I thought I would just run the ankle by her. Since the ortho reg had assessed Isla just after coming out of a GA and she'd had panadol, we didn’t really know how much that might be masking her symptoms. The oncologist thought she looked ok and suggested giving it a couple more days and then maybe getting an xray done if she’s still not walking.
Isla did start standing and walking a little on her ankle over the weekend, so we assumed she was probably ok. She still had quite a bad limp for a few days. By the end of that week she was still limping and it seemed to not be getting any better for a couple of days. We had a trip to Kangaroo Island planned for the following week, so we wanted to know for sure that her leg was ok before going away. We went to the GP Friday night to get an xray referral and took her into my work Saturday morning and we xrayed her leg. The radiologist confirmed that there were no fractures and suggested that you should see something by now if there was anything (being 1.5 weeks post trauma). He suggested maybe a repeat xray in 1 week if she was still limping, in case there is a very small fracture that hasn’t shown up. Fortunately, she started walking a lot better that weekend.
© Alison Davey 2021
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