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Your child is sick in Hospital. Survival basics. Part 2

Sometimes you end up in Hospital unexpectedly with your child for a long period of time. Below is part 2 of my survival basics.

Hope for the best, prepare for the worst. Unfortunately, we didn’t do that the first time round. The plan was, one operation and voila! One baby, heart problem sorted. After her first surgery, we got the call from the surgeon to tell us how it all went, and that he couldn’t completely repair her heart as one of the holes was too large, she would need a second open heart surgery in the future.

Since then, with every subsequent operation, (she had numerous smaller operations) we didn’t have any expectations of recovery time and anticipated there would be some kind of complication. Each time we’ve been pleasantly surprised

Ask for / accept help. It’s scary and it’s hard and it really is a time that you just want to pull your family close to you, hide in a shell and hold on tight. It’s also a time when you really need your support network.

You may not want to ask for help, you may not even think you need help, you may feel that you can’t face other people as they couldn’t possibly understand. My advice is, take any and all help you can. A home cooked meal, someone to mow the lawns, put the bins out, clean your clothes, someone to sit with and let you cry if you need to.

 

We approached a heart charity for help, prior to Miss S’ surgery and during her hospital stay, unfortunately we did not receive any support from them. There is also supposed to be ‘in hospital’ support which we tried to access during out time there, however again we received no support. From our experience, and others we have talked to, this seems to be quite common (the RCH shared this last week Support Group Directory). Wonderwife is currently on a mission to change this and make sure that families are getting access to the support they need.

If you are lucky enough to have friends and family around you, call on them, they are usually wanting to do something but are too afraid to ask. Give them something to do.

First time wonder-mum got to hold little Miss S, in over week.
First time wonder-wife (mum) got to hold little Miss S, in over week.


Find out what you are entitled too. 
Every hospital is different. We got discounts on parking when Miss S was in ICU at the RCH, you can also get discounted parking if you are a concession holder. Other hospitals offer things like week long parking tickets

Most hospitals have volunteers that can come and stay with your little one while you have a shower or go get some food, fresh air, run errands etc. The RCH has also a Grandparent program where a more permanent volunteer is matched to you and your child. This consistency is likely to be more comforting for your little one.

Ask if there is someone you can talk to about whatever you need; your finances (an unexpected long stay can impact your work). Music therapists, play therapists, physiotherapists, lactation consultants etc these services are all available to you and your child during your stay.

Again, you will be feeling overwhelmed, and often you are not automatically provided with this information. Ask.

 

Enjoy the little things. Sometime it’s the small things that can make your day when your child is in hospital. For me it was getting out and having a nice cup of coffee, sitting down and watching other people go by, or even sitting outside with the boys having lunch in the sun. Have a hot shower, or just going for a walk.

Sometimes, even with lots of tubes, lines and wires, the nurses are able to help you hold your little one, just ask. If not, you may be able to perform tasks for them that the nurses would normally do, like give them a little wash or change a nappy. It may seem strange, but it was a wonderful day when we were able to give Miss S a proper wash for the first time in weeks.

First time holding Miss S since she had her operations.
First time holding Miss S after surgery #1

Accommodation. If you live far away, find out if there is accommodation close by. Maybe Ronald McDonald House or a hotel, you may have family or friends nearby that might let you crash on their couch for a little while.

A new hotel, The Larwill Studio, has recently opened next to the RCH, they have special rates for people with children in the Hospital, unfortunately they don’t really cater for children (siblings) though. The RCH and most children’s hospitals have couches or chairs that turn into beds for one parent/guardian to stay overnight (Wonderwife found this app at the Boston Children’s Hospital, we have spoken to people we know at the RCH who inform us that there is something similar in the pipeline for the RCH).

Food. Make sure you eat and try to eat well. This has a huge influence on how you’re feeling and your mood in general. Ask hospital staff what is good in, or nearby the hospital. They’ll know as they are there all the time. Sometimes there’s a great little place just a block away, or one cafe at the hospital is better than the others.

Little Miss S one year old.
Little Miss S at one

There is no harder thing than seeing your child helpless and in pain. It makes you angry, scared, frustrated and exhausted. I hope that this helps you, or someone you know, or allows you to better support someone going through this.

Miss S will shortly be going back to hospital for what we hope will be her last heart surgery. This time, we plan on taking our own advice.

Have you been through the experience of having a child in hospital? What is your survival basic?

Till next time.

Survive.

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Demos Karkazis

I'm a husband and father of three. I work hard and try and be the best dad I can be (not always a success)

Latest posts by Demos Karkazis (see all)

  • Good luck! You are so strong!!! Thank you for sharing these tips with us :)

  • My Tip;

    If you do find yourself in the Royal Children’s Hospital, the Family resource and respite centre is a Godsend (http://www.rch.org.au/frc/). Likewise with the Ronald McDonald Family room at Monash Children’s (https://www.rmhc.org.au/our-programs/family-rooms/monash)

    So proud of you for being able to share all of this with the world Demos xx

  • Katelyn

    Demos, this is a wonderful guide for parents about to embark on this difficult ride. We just hopped off (well… Not sure if you ever really hop off, but the ride has definitely slowed), we to have a daughter, our third baby also, with TGA. We are in Adelaide, so she spent a week in PICU and was flown at day 7 and had surgery at day 8. Rose also had post op complications and stayed in PICU at the RCH for 12 days then Koala for another 12 days…

    All of your points were so accurate, especially the “hope for the best, expect the worst”- going into it we thought we were up for the routine “leave 10 days after surgery” deal! We were wrong.

    For us, the emotion of hospital was heightened with the intense homesickness we had for our other children in Adelaide- especially when it felt there was no end in sight.

    Rose is 11 weeks post op now and doing great! What a little life she has had already!

    I wish I had read this before going to Melbourne, but so glad I have now!

    Thanks, Kate

    • Demos Karkazis

      Hi Kate, thank you for sharing your story. I think you are right, I don’t think you ever really step off. You made me teary as I read you message, so very happy to hear that Rose is doing great.

      Wonder wife and I really felt that there needed to be something for parents to read as a guide. Sorry you didn’t get to read it before your stay in Hospital.

      I can only hope it helps someone out there.
      Wishing little Rose all the best for the future, and the rest of your family.

      Till next time.
      Survive
      Demos K