Just to clarify upfront – we’re not currently in hospital. When we are staying in hospital there’s not usually too much time to write blog posts. But I have had a few people ask me what it’s like staying in hospital, so I thought I’d post about it.
We’ve had three overnight stays in the Westmead Children’s hospital now. The first was when Ethan was initially admitted back in August and we stayed for about 10 days. That was in the children’s oncology Camperdown ward and it was by far the best set up from our three visits. The room was very large and there was only one other bed in the room. We got to know several other children who shared the room with us during the initial stay before they either went home or were reassigned to a different room.
The next two stays in hospital have been when Ethan has had fevers and hasn’t had the white blood cell count to be able to fight infections in his body. The Camperdown ward has been full both times and so we’ve been assigned to the Clancy Ward a general medical ward where kids have a wide range of health issues.
So when I am in hospital I sleep on a fold out bed that is next to Ethan’s bed (pictured below). During the day it packs away nicely and acts as a lounge chair.
The hospital has a linen cupboard where they keep sheets, blankets and towels. When we first arrived in hospital there were prices all over the linen cupboards – something like 50 cents for a towel, 85 cents for a sheet and $1.20 for a blanket. When I asked about renting the linen the nurse rolled her eyes and said it was all free to use. She explained that the pricing was put there by an over zealous cost-conscious manager (who never actually works in wards) reminding everyone how much it costs the hospital to wash linen. So it’s all free to use, but we make sure we use the linen wisely which I guess means the silly signs did their job!
The linen has been fine except for one night when the blanket just didn’t seem to cover me and I couldn’t keep warm. The next morning I realised that there were two sizes of blanket and I had taken the one for little kids! I won’t make that mistake again.
After three stays I have learnt a few things about getting a good night sleep while staying in hospital. I’ve always been able to sleep pretty much anywhere, so the fold out beds are comfortable enough and it’s fantastic that I get to sleep next to Ethan.
Noise and toilet visits are the two biggest hindrances to getting sleep. I have posted the photo below so you can see the two machines that Ethan is hooked up to when he’s in hospital. (He was super excited that morning because Jerusha bought the first mangoes of the season. In summer Ethan is affectionately known as the “Mango Monster”!) Anywhere he goes, the machines go too. They have wheels on the base and we take them everywhere, even outside when we go to get some sun. The cords going into his central line allow him to be about 1 metre from the machines. There are lots of kids walking around with them so it feels pretty normal at the hospital.
The machines regulate the flow of antibiotics and other medicines into his body. But they beep. A LOT. And often both of the machines are beeping at the same time!
Usually the nurses set them on timer for about one hour. But if the nurse doesn’t return before the hour is up they beep loudly until someone comes and turns them off. Clearly they were designed by someone who wasn’t trying to get some sleep in a hospital!
In the ward we have been most recently, there are much smaller rooms and more children – up to four at a time. So sometimes it’s like a beeping symphony as they all go off at about the same time. I look back and laugh now at one particular night where my pillow was situated right next to the curtain dividing us from another young boy in the room – and his machine was just on the other side of the curtain – about 30 cm from my head. Fortunately there’s been a little more distance from the machines and my head since that night.
I didn’t realise how good it was to have a closed door in our first room. On the most recent visits we haven’t had a door on the room and so you hear the beeping from lots of machines in the ward, crying kids and the bell that rings in the hallway to call the nurses (which ironically is the way to get them to turn off your beeping machine).
Ethan has done a great job of waking up in the night to go to the toilet. I feel bad for him when he’s on antibiotics because they pump fluids into him day and night and so he wakes every hour or two in the night needing to go. We unplug his machine (which makes it beep – although we can turn that beeping off!) and I carry him and we wheel his machine to the bathroom.
So the last two visits to the hospital I have left feeling pretty exhausted. And in writing this, it’s no wonder that Ethan is wiped a lot of the time too, but he still won’t take day naps!
Ever since we got married Jerusha has worn ear plugs when she goes to sleep. I don’t snore, but just having someone breathe in the same bed as her keeps her awake all night. So there was never even a word spoken between us about who would sleep in the hospital, it was my job to do. I lie in bed in hospital sometimes listening to all the noises going on and start chuckling to myself that I am glad I can sleep there and not Jerusha. She wouldn’t sleep a wink.
It’s good that we can do this together. Apart from the noises and the funny bed, with her bad back she can’t lift any of the kids and so it’s much better that I can carry Ethan to the toilet in the night. We’ve met several families who have to do it alone. One lady has been in and out of hospital with her son for 9 years – his entire life. Her husband left when the son was diagnosed and she’s been doing it by herself ever since.
Several families we’ve met are from the country. One family in particular lives several hundred kilometres from the city. The wife stays in the hospital during the week and on Friday night her husband drives the 3 hour trip and replaces her and she then drives back to their country town and looks after their other two kids on the weekend. On Sunday night they do the switch again so he can go to work for the week. They have a three year old with leukemia.
We live about 15 minutes from the hospital so are extremely fortunate that the travel is so convenient.
Another of the good things of staying in hospital is getting to know the nurses. They are all very different, but are all great with the kids. They rarely roster a nurse on for consecutive days to look after the same child, but we’re starting to get to know a few that we’ve seen several times.
And the best thing about a stay in the hospital? Getting to come home! Ethan has had enough by the end of it and is really happy to get out of there. I appreciate a lot of things much more when I return home after a few nights in the hospital. Meals are delivered regularly for patients in the hospital, but it’s more difficult for parents. When I stay in hospital I can store things in the fridge, but I usually get something to eat when Jerusha comes in and she’ll have some of the meal that people have kindly brought to us that day or the night before.
The other thing I really enjoy about the hospital stays is that I get a lot of time with just me and Ethan, especially at night when getting him ready for bed. I consider that our special time and I think we’ve definitely grown closer together because of it.
We know there will probably be a few more hospital stays ahead of us and are grateful to have a hospital so close with so many good resources, especially that I can stay there with him every night.