The way EUA day at the Royal Children's works is not like any other theatre list I have ever seen (working in hospitals I have seen a few). We check in at a day surgery admission desk and wait in a waiting room with other children and families who are there for all sorts of procedures for about 5-10 minutes (max 30 mins - once, when the computer systems were down). We are very quickly brought through to modified bed bay area where there are seats all around the room for each family to set themselves up and wait for their child to go into theatre. There are playmats and toys in the centre of the room for the kids, along with the SAME play therapist every time. So the kids can play while they wait, mingle and see other kids who look like them - maybe they have a squint too, maybe they have a prosthetic eye etc. We all get to know the play therapist and she gets to know all the kids really well. Of course one of the toys that is always there is a doll with a sick eye for the kids to put eye drops in, take her temperature, attach a blood pressure cuff etc.
Not only are we away from the 'generic' waiting room and sitting somewhere more comfortable, but we are all there in one place for the doctors, nurses (same group every time) and anaesthetists (same group every time) to pop in and out of completing obs, eye drops and consent forms. The biggest benefit (for families) of doing it this way is that it provides the opportunity to chat and get to know other Rb families and develop relationships with other parents who are going through the same thing you are. When we first arrived in Melbourne and saw the bonds between families, like old friends catching up, we felt really lucky to be a part of that.
During Isla's second EUA in Adelaide we felt like we were 'old hats' at it already, having been there 1 month prior. We knew she had cancer, we knew what would be happening on that day, we knew it was likely that they would find some new tumours, we knew our Dr reasonably well. So we were pretty comfortable with what was going on (with our 3 month old baby). Sitting next to us in the holding bay was a mum and her teenage daughter with a broken wrist, waiting for surgery. The mum was crying. She saw how calm we were (not having a clue what we were there for) and said to us 'I don't know how you do it'. I think we probably smiled politely and said 'just doing what we have to do' while thinking to ourselves 'you've got not idea how worried/stressed/exhausted/drained we actually are'. It's possibly the first time that teenager has ever been into hospital, ever had a GA, ever had surgery and of course it is a stressful time for the mother. While we know her comment came from a good place and we completely understand that being in hospital with her daughter is stressful, the thoughts still run through your head of 'does she think we are terrible parents because we're not crying?' or 'lady, you have no idea how much we wish we were here for a broken bone!'
By being in the little protective 'Rb bubble' in Melbourne it actually makes a huge difference, simply by being around people who know what you're going through. You don't have to talk about it, you don't have to know every detail, you might just give an understanding smile when you see them carrying their crying child back from another lot of eye drops and we all just know that everyone understands what each other is going through. Never will you have to watch a hysterical mother crying about a tonsillectomy or grommets while you wait to see how much cancer is in your child's eyes/if they need more chemo/if they need some other form of treatment/if they are going to lose their eye. This absolutely works both ways and for all the time we have spent walking around hospitals, one thing we know for sure is how lucky we are! There are a hell of a lot of people dealing with worse things we are and doing an amazing job at that! If you feel like getting some perspective, walk around a children's hospital for a couple hours and you'll soon see how lucky you are...... probably after COVID though as you might not get let in for a 'wander' right now ;-)
Garreth and I usually kept mainly to ourselves on these days, but there were a couple of families who we started to regularly chat to. We probably wish we had made more of an effort to do so earlier on, but you have to be ready to make these connections as sometimes you just want to do what you have to do and go home!
The Royal Children's Hospital, particularly the Rb theatre team, are VERY much into family involvement and working WITH the child/parents/play therapist to make everything as comfortable as possible for the child. These kids are visiting a hospital monthly (sometimes more) for a large chunk of their childhood, so if we can make it a more pleasant experience for them in any way, it's going to be better for EVERYONE involved in the long term. At the RCH they always speak to the parents about how to go about doing things and what works best for their child. Each child had an ‘Anaesthetics Passport’ where you can record what works well getting your child off to sleep. Play therapy would bring an iPad into theatre for Isla to watch cartoons/listen to songs as they are putting her to sleep. There was a special room to go into to have drops done, and once you leave that room it is back to playing and fun while you wait to go into theatre. There were images projected onto the ceiling for the kids to watch while looking up for their eye drops. They had a drops chart for the kids to rip off an eye sticker each time they did a set of eye drops. The anaesthetist would make up a different song to sing to one of the older kids who was starting to fight his anaesthetic. Did it work? - I don't know. Did it make him smile? - sometimes probably... Did it make all the parents smile? - Definitely! Little things like this just make a HUGE difference.
While it's obviously not always possible to run a theatre list this way and Melbourne have the numbers (unfortunately) to do it this way. It does work exceptionally well and as parents we really appreciate the effort each and everyone involved in 'EUA day' go to to make it run as smoothly as possible.
Of course the wonderful facilities at the Royal Children's Hospital help to make hanging out there for 1-2 days every month a little more bearable too!
RCH 'wildlife'
© Alison Davey 2021