ICU after more surgery, trying to stand
For many people with children living in and out of hospital is not a reality they have to face. But our life with two seriously ill children and a third, this is our reality. Although there are seasons in the girls' illness that sometimes see us living more ‘typically’ than other seasons, there are a few things that I have learnt over the years that help with the adjustment of coming home after spending months in the hospital.
What happens in hospital
It may seem strange to some people - the thought of coming home should be completely joyous, and easier than the stress and juggling that has to occur when living at the hospital, but with a seriously ill child this can be an extremely overwhelming and frightening experience.
No-one wants their child in hospital, but while being admitted, there are small tasks that just happen, and we give no thought to. Things like having fresh pressed linen, every time your child vomits, or wets the bed, as well as the extra hands to help change the bed. Your child’s meals come delivered on a tray to whatever diet they need, and if you need something different they will cater to it. The syringes that you don’t have to pay for, and that are thrown out after every use, the same with medicine cups.
The nurses that are like angels of the night that help your child get to the bathroom with their poles, lines and machines. They record the output and input, monitor fevers, and weight, and meds and charts and supplies. They send a cleaner when there is vomit or urine, or blood on the floor which is quickly cleaned up. The vomit disappears and the dressings changes get done under sterile conditions.
Your job in hospital is to be their mum or primary carer. It is to hold their hands when they are in pain, to wipe their tears and rub their back as they vomit. It’s to play LEGO, board games, puzzles, and to help them to the shower chair when they need it. To brush the knots from their hair and advocate for their needs, their feelings and their wants, so they are heard, and you are listened to. But what happens when you get home?
What happens when you return home
Many times we have come out of hospital and felt the mixture of overwhelm, fear and delight of being home. With open wounds, new tubes to dress, and a whole new regime to try to manage. With poles, and shower chairs and wheelchairs, and so many medications it would make your head spin. With vomit bags, masks, the right dressings for the right tubes, pain medication, charts and lists.
On top of this, all of a sudden you now have the school runs of siblings, or daycare, or kinder, homework, dinners, lunches, breakfasts, washing, cleaning, non disposable syringes, and med cups that now need to be washed after every use.
The management of the medication, the weight, the temperatures, the input/output, the multiple visits and appointments for all the specialists you have to see, plus some, now we are back at home — where do you get time to hold their hand when they need it, or wipe their tears, or rub their back- when you are surrounded by the vomit on the carpet you know you have to clean, it’s time for dinner that hasn’t been started, a dressing change is due, medication needs to be given and the washing is getting out of control…….
1. Take a moment to reflect
The first step is to take a breath. Recognise that although being home is filled with tasks and jobs to be done and completed, it is also filled with love and memories to be made. Recognise that you made it through the recent life threatening event and made it back home with your child, instead of saying goodbye in ICU, when the doctors were crying beside you. And remember that you got through that, so you can get through this. However it may look.
2. Organise the medication
Depending on the illness of the child/ children first thing to get into order will be medication. Some medication is life saving and is crucial to their health, which can help with pain, vomiting and of course the treatment. so always start here. I will share more in an upcoming post how we have learnt to best manage the children’s medication.
3. Make a meal plan
The very next thing to do is sit for a few minutes and meal plan. This has taken me a while to manage correctly, and detail further, so completely understand if this is overwhelming, but the time, stress and worry about dinners and having food in the house is removed.
I know first hand this is a lifesaver on its own. I gave up on trying to get out to the supermarkets, as I couldn’t take my ill children, and getting the time for me to go was proving too difficult. I now always order online.
Start simply with a handful of easy recipes. My advice here is to try to make double and freeze what you can for the nights where cooking is simply out of the question. I know many mums and families who order things like Hello Fresh and Uber meals, when times get tough and this is a wonderful idea also. We live in rural Victoria, so this was never an option for us. I know this can also be a little more expensive, but release that guilt for the moment and allow some grace in your life.
4. Drop the guilt
This step is something I am simply not very good at but I have become better at this over the years. When I think back, life would have been a lot easier if I had done more of this.
Know when to say ‘Yes’ and know when to say ‘No’ with no guilt attached. I love the saying that when you say no to something - you are actually saying yes to something else.
You will quickly learn who is there to stand beside you, and those who simply cannot understand, or chooses not to. There are seasons that allow more time and space for those who may drop off along the way and seasons that don’t. Coming home with a child who has been through an ordeal you, your family and the doctors can only understand, is usually a time when you are better to surround yourself with people who will do their best to understand and assist with the practical things in life.
The help you can say a definite yes to are things like: cleaning of the floors, the
washing, meals, and taking out the ill child's siblings, so they can enjoy some life, and forget for a moment what is happening around them. There are services that can help with all of these things. If you are lucky enough to be a part of NDIS, some of this may be covered, otherwise places like local councils can also provide support.
Trying to remember to put one step in front of the other is important at this point in time, and to remember you are not alone.