Skip to content
lessons from hospital
Lessons From Hospital

As many would know, Hope has visited the hospital, on more than one occasion, needing to stay for a week or so. During these times, it’s amazing what you see and what you learn. Sometimes the expectations of others really can surprise you so here’s a few things that I’ve learnt in our few trips to the hospital.

You Won't Get Any Sleep

The amount of times I hear parents complaining that they didn’t get any sleep overnight is crazy. Most of the time when we have had a stay of more than a day, we have been in a shared room. That room may only have 2 kids, other times, it’ll have 8 and it doesn’t matter who you are, you get put where there is space. Sometimes, they will try and group kids together that have similar needs which makes complete sense. There’s a few reasons why you don’t get any sleep. Firstly, when kids are unwell, they need to be monitored. This means nurses are going to come in and out all night and check vitals. When possible, they will do this without making too much noise, or turning on lights. They try not to disturb those that are sleeping, but it’s not easy. Secondly, the kids often need medication at regular intervals. If they need it every 6 hours, nurses will have to wake them or try to give it while they sleep. Thirdly, kids are unwell and feeling terrible. When kids feel terrible and are uncomfortable, they cry. There’s nothing anyone can do about that. There’s actually nothing worse than hearing other parents complain that they didn’t get any sleep because my child was crying through the night. You find the kids will sleep through the noise so it doesn’t bother them. But the last thing we need as parents in hospital is to stress about our unwell child keeping other parents awake. I think we just need to keep in mind that nobody WANTS to be in hospital, we don’t plan on being there, we’re all tired, stressed and worried.

lessons from hospital

Nurses Are Working As Hard As They Can

If you’ve been in hospital before, you would know about the buttons. Sometimes, you can press the button for the nurse and you’ll be waiting a while for them to come. It’s not because they are lazy, and can’t be bothered answering you. They’re likely busy with another patient who may be vomiting, they may be in the middle of helping insert cannulas, there may be about 5 people pressing that button and needing assistance at the same time. The thing to remember is that you’re not assigned your own personal nurse. There’s a group of nurses assigned to a ward and they have a list of patients each. When one is busy, another will often respond to your call, but if they’re all busy, sometimes you just have to wait.

There's Often Someone Worse Off Than You

It’s a little horrible to think about it like this, but most of the time, as bad as things seem for you, there’s always someone in a worse sitation. I recall times where I’ve been at hospital, exhausted and just praying that Hope would get better, but as I’ve walked out of the room to get ANOTHER coffee, I’ve walked past kids with bandana’s on their heads, I’ve walked past the line of kids outside the oncology ward waiting for their chemo and it puts everything into perspective. What I’m feeling right now, is really nothing compared to what some other kids and families are going through.

The Red Button is for Emergencies

This kind of goes along with the buttons I mentioned above. There’s often a button on a handheld device. But there’s also buttons on the wall. Sometimes there’s a green one and a red one. You only really need to touch the green one to call the nurse. What happens if you touch the red one? EVERYONE comes running. The red one is for emergencies. Asking for more blankets, may seem pretty urgent if you’re cold, but it’s not an emergency.

And slightly off topic, but a little tip. If you ever find yourself laying in bed after a caesarean, still recovering from the epidural, needing assistance and the wardens have forgotten to give you the button. Get your phone (hopefully the wardens have put that in arms reach for you), go onto Google, find the phone number and give the nurses a phonecall. I had to do this after I had Hope and Alexander. I called and simply said something along the lines of, “I’m in bed 27 on the ward and I don’t have my buzzer.” They found it quite funny, but also clever that I was able to find another way to reach them. I don’t remember now, why I needed that buzzer, I was probably just wanting to turn the tv on and often it’s all on one remote.

Beeping Isn't ALWAYS Bad

Ben and I both leant this in the NICU when Hope and Alexander were first born. Day one, you hear the beeping, you look around and the nurses “appear” to be ignoring it, so you panic. Day 30, you almost don’t hear the beeps anymore. The beeping is often set to a certain level and nurses will glance up when they hear the beep to check. Often it beeps because levels dropped for a few seconds, but it will pick up again so if the child isn’t showing any signs of distress, generally, they are fine and they will continue to monitor. If the beeping goes on and off continually, action will be taken.

Sometimes Others Just Need Someone To Talk To

Parents in hospital are worried. It’s horrible seeing your child sick and in pain and not being able to do anything to help. Nurses and doctors come and go but they can be so busy, they’re not there for long. Sometimes a conversation with another parent can go a long way. In one of our recent stays, I was talking with the parent of another child in the room. I discovered she had 3 kids, one of which had high needs and was highly dependent on her, so while she was in hospital worrying about her sick child,  she had another at home she was worrying about also. Just talking to her, allowed her to share her worries and get them out. Having someone just to talk to, that will just listen, can often help relieve some of the knots in the stomach. A few words of encouragement can lift their spirits too. Neither you nor them can suddenly make the kids better, but you can help each other through it.

lessons from hospital

Doctors Aren't Keeping You There To Be Difficult

The amount of times you hear parents just saying “Why can’t we go home now?” shocks me. The doctors are doing their best for your child. They’re not going to send them home without being sure that you won’t be back within 24 hours. In our case, there have been times when nurses have signed off their shift having the next 2 days off and saying “good luck” to us because they don’t expect we’ll still be there when they’re back next. But… things don’t always go that way because Hope is difficult to wean off her oxygen. This means that we don’t go home until doctors are certain that she can go without it. We often find ourselves saying to them, that we are prepared to stay as long as we need to. We don’t want them to feel like they have to rush us out the door. We want to know that Hope is well enough to come home. If the doctors are keeping a child in, it’s because they are still concerned about something, it’s not to torture you with another sleepless night.

lessons from hospital

Sharing The Load Can Be Super Helpful

While it’s an expensive way to go, Ben and I have found that sharing the load, and switching on a daily basis has been better for us physically and emotionally. For some families, this is difficult, but when it’s possible, we would advise to do it. As mentioned, you don’t get any sleep in hospital, switching daily means you get a terrible nights sleep, with an ok one (I wouldn’t say good because the worry can still keep you up when you’re home). You get that little bit of sleep that will keep you going on through the next day. It also means that the other kids get to see both of you and they’re not missing one parent. I work from home which makes this an easier option for us, I can take my work with me and I work when and where I can. I would drop kids to school, go to hospital to relieve Ben and he would go to work, stay home with the boys, go to work the next day and then swap with me when it works (either before or after school pick up). This would be easier if the hospital was only 5-10 mins away but for us it’s a 45-60 min drive, depending on traffic. Yes, it sometimes means the kids are in the car a little longer and eating more take away for dinner, but it’s what works for us and it’s only temporary.

A Game Of Peek-A-Boo Can Work Wonders

This one is just a little fun one. I was recently in the emergency room with Lincoln and a couple were there with their young baby. This poor little one had been crying NON-STOP since I had been there. It was a busy night and I’d been there for well over 2 hours already. As time went on and the child kept crying, you could see the stress and concern on the parents faces who knew their child was getting worse. They told me when they arrived, the baby was crying a little but could be consoled. By now, nothing was helping, until I played peek-a-boo. I was sitting next to Lincoln and the parents were a few metres away, baby looking up over their shoulder, crying, and I just played peek-a-boo. It was instantly silenced. So I just did it again and again. The parent looked around and saw me and just silently mouth “thank you”. It was a moment of relief, and I felt glad that I was able to offer them that moment. I kept on playing peek-a-boo until it was no longer offering any help. While I know I didn’t do anything to help the child’s pain, it was a small distraction from whatever discomfort they were feeling, and it gave the parents a few moments to breathe.

Kids Hearts Are Full Of Joy

Finally, kids are amazing! Even while they are unwell, they still manage to give smiles. They love even though they are in pain. They have random conversations with you about imaginary worlds. When they start to feel better, you hear them giggling and walking down the hospital ward halls looking to say hello to everyone in all the rooms. It’s not always nice to know you’re in a hospital and there are children suffering all around, but when you look at the kids, many of them, still feel the joy in life, regardless of what they are going through. They find the positives in ways that we struggle, and sometimes just watching those young kids enjoy a few moments where they feel great, makes the hospital not seem like such a bad place to be.

SUBSCRIBE

Don’t miss out on any news or new blog posts. Subscribe to our blog to receive updates and recent blog posts. 

Hope's mum, a lover of dancing and singing, enjoys quiet moments amidst the hustle and bustle of family life. She works hard to ensure her kids are well taken care of, while also serving as a team manager during the day and managing the Raising Hope Designs website in her spare time. She is dedicated to seeing a brighter future for children with Down syndrome, advocating for acceptance and love every step of the way.

This Post Has 0 Comments

Leave a Reply

Your email address will not be published. Required fields are marked *

Back To Top