Maya and Joana hospital stay

7 Tips for Surviving Your Child’s Hospital Stay

Hospital stays are the most challenging time for me. Just the thought of it makes me panic, feel stressed, and kind of frustrated. They are unseparated part of the “special child” experience, though. So, we might as well prepare ourselves that the reality is that we will have to stay in the hospital with our children from time to time.

Since Joana was born, we have stayed in the hospital

  • One week when she was just a baby;
  • Two days for the purpose of examinations when we moved to Germany. She was one year old.
  • Five times for two-three days till the time she was three years old.
  •  Between the age of 3 till 4years, we stayed for 2 weeks, then one month, and later 1 week at the clinic.
  • And she just turned 5 when we stayed in the hospital from 15.11.2019 till 06.04.2020. Yap, the last time it lasted almost five months.

Our first hospital stay was pretty traumatic and terrifying. Joana was three months old baby with epilepsy seizures, which came like a shock to us. The doctors were doing a lot of blood research, which means there were many needles in her arms, legs, and head, a few EEG during sleep, MRI, etc. I remember I was scared, under tremendous stress, and it was challenging for me to take care of a baby in a hospital condition. I remember thinking – I will not survive hospital stays. It was too much for me, physically and emotionally. I don’t blame myself for expressing so much resistance toward staying in a hospital. It was simply my reaction for the time.

That has changed in the next hospital experiences. Joana was around three years old when I stopped feeling so sorry for the both of us and start to appreciate all those good that comes out of it. When we moved to Germany, we continued to stay in a hospital from time to time, sometimes even 500 km from our city. That was challenging, but it needed to be done at that moment. I’ve learned that instead of being negative and complaining all the time to my friends and relatives that I can’t stand hospitals, it’s better to focus and find out the positive things I could get from this.

There are techniques, methods, and tools you can use to make your (extended) hospital stay more comfortable.

(1) First is to accept that you and your child need to go to the hospital.

I started to say to myself: My child will get the help she needs. When they announce that now we can go home, that means that now she is well and that’s fantastic news. This whole experience changed for me over the years. Before, either doctor would say: she needs to stay for a while, or we would see that even before we go to the doctor, we will spend some time in a hospital, and my eyes would be full of tears. I was thinking oh no, not again, it’s going to be hard for me, oh so much stress, they are going to make blood tests to her many times, when she will cry at night I won’t have my husband’s help to calm her down, and I am going to be exhausted all the time… and so on.

When I talk with my husband on this subject, he says that it was hard for him to know that we are in hospital. We are not the three of us together. He knows that its exhausting to me, but he always is thankful in those moments that Joana is surrounded by proper medical professionals, which in our experience does a great job with our daughter.

(2) Second, you can be miserable, of course, all the time. You can count the flaws and summarize everything wrong at that moment, OR,

*you can focus on getting to know better the nurses and the doctors, have conversations with them about what can you do and what can they do for you and your child to go home as soon as possible.

* it’s an opportunity to learn. Ask the nurses and the therapists for tips, a new way of exercises, or lying positions for your children.

It is crucial how do you see the whole “going in a hospital” experience. When you think of a hospital as an institution, do you have negative emotion of being somewhere that it’s not at home or that you are somewhere where your child will hopefully get the help it needs? I’ve witnessed all types of parents during our hospital stays. Some were very nervous and angry that they even have to be there. Not knowing how to deal with those emotions, they continuously fight with the doctors and the nurses, looking for negativities, and being disrespectful toward the medical staff. They usually spend all their days in hospital in that mood because often, it happens one thing after another that makes them keep being in that mood. After all, simply their focus is on negative things, so they notice them more. I think this attitude from the parents it’s not fair.

I get to learn something. I always watch the nurses, the therapists carefully, and learn new tricks, change her positions, and what exercises I can make with her. When I talk to the doctors I hear them thinking out loud what if they give her this medicine and not this one, let’s see, if we give smaller doses from this and a little higher from that, aha, then the side effects can be this and this, but she will benefit on this and that way… and so on, I hear carefully, take notes and that is often useful for when we go to the next hospital, I can explain pretty good what was made, and what we were talking with the doctors as our next steps.

(3) Third, expressing gratitude that such medical treatment actually exists.

Gratitude, not nervous speaking /thinking/acting on the way there. I know, it’s not pretty, and hospital stay is never on your wish list, but if you have to go – you go, again, having on mind that today’s medicine has moved so forward, and there are actually people who work there for you or your child to get well again.

When we are in hospital and watch the doctors and especially the nurses the effort they give and how much they work around Joana and the other children, I thank God that those people choose to work that profession and not something else.

There are negative aspects of hospital stay; it’s depressing, it’s boring, it looks like staying in prison, it’s tense. But there are a lot of positive sides too. Communication with the doctors, learning things about your child’s health, watching the nurses, learning from them, etc.

(4) You can connect and communicate with the other parents who are staying there.

It’s an enjoyable experience. I have many close friends whom I have met in the hospital who were there with their children, the same as me. Plus, in sharing your stories and experiences, you learn a lot and get a lot of tips. Plus, it’s always easier if you know that you are not alone. There are many people with similar experiences like you. At each hospital stay, I have met amazing parents. Talking to them helps the time to go by faster, and it is also useful. You can often hear some tips or information about what they are doing, about some other therapy or hospital. Staying in a hospital allows you to meet parents that you wouldn’t have met elsewhere that could change your whole life. You will hear something; you will receive information. Those are people whom you have a lot of in common.

(5) You can set up a daily routine.

It won’t be as comfortable and pretty as the one you have at home. But it is possible to have one. You can work with the nurses to get 1 hour for yourself in the morning and read or go for a walk. If you are in another city from where you live, you can manage some schedule to take a longer walk, like a tourist (and pretend like you are on vacation for 2 hours:))

When Joana sleeps, I get to meditate or think about the things I am grateful for, or I read, or I plan my next steps, the goals I want to accomplish. When she was almost four years old, we were in a clinic specialized in epilepsy, 500 km away from our town, and we were there because she needed adjustment of her therapy. She cried for weeks day and night, and although she hasn’t seizures at that moment, she still needed adjustment of the medications. The reason she was upset so much was neurological.

We would be done with all the appointments, blood tests, and therapies by 1 pm and until the evening, we would walk around the hospital. The hospital was surrounded by nature, and it was a pleasant environment. So, here we are, Joana and I, taking hours-long walk. That gave me the opportunity to think about my life peacefully, about my goals, about the way I see things, and the way I judge things. It allowed me to see things from a distance. And that helped me gain a new perspective. I joked with my friends that I’ve come to a revelation😊 I mean really, walking in nature so many hours with a sleeping child in its buggy, no people around – is very close to a meditative state.

(6) Make a list of every little thing you can do with your child or alone.

You can teach your child positive affirmations, live in the present moment, and meditate together. If your child understands words and communicates, you can have long conversations and plan things, fantasize, or listen to music. You can tell funny situations from the past, paint and draw things or watch TV together if there is one. Don’t be nervous all the time because you are in the hospital. Your child will feel that, and it will think that it is its fault and that’s why you are in the hospital.. Show on your personal example with the attitude that there are moments like this in life. It’s OK to cry if it wants to. Tell your child that it’s OK to express sadness, wanting to go home, etc. That is totally OK and explain that this too shall pass and eventually you will come home.

You can use this time for yourself, either. Learn from the doctors, the nurses, and the therapists, ask questions, make connections to other parents, make your own notes. Cooperate with the doctors with information about previous therapies; should you try this or that; they are not all-mighty, they are only humans, and your intuition matters a lot. You are the ultimate and the most prominent doctor for your child.

And please take this advice: ask if there are some extra activities for parents organized by the hospital. In our last hospital stay, I went on a cooking classes a few times, to the gym and a sauna. It was great:).

(7) Don’t suppress your feelings.

It’s OK to cry, to be scared, to be angry and to be desperate. You don’t need to impress anyone, so feel free to be yourself. If you feel like crying – cry. We are under the most significant stress whenever we are not who we are at the moment.

Bear in mind that you are not going to be there forever. And you are not there alone (although your family is not with you). A whole team of doctors and nurses are working on your case, so you and your child can come home as soon as possible.

 

In the end I want to say that during your hospital stay there is a chance that the child is suffering a lot of pains, or is intubated or else. This might sound harsh but it is its journey. If there was anything the nurses and the doctors can do about that -they would avoid all the needles and all instruments that cause pain. But in some cases, those things must be done. The most you can do at those moments is to be by your child’s side, which you are already doing.

No matter how long you are in hospital, and how much more you need to stay, know that it won’t last forever. Eventually, you will go home.

The last time we went to a hospital in November 2019. And we were home at 06.04.2020. The world was already one month in quarantine, and I heard complains and dissatisfaction from everybody about the isolation. I experienced the opposite feelings. When we came home, I appreciated it so much, and I was madly happy to enjoy the comfort of my home with Joana and my husband. It’s so easy to appreciate your everyday life and routines when you are finally at home.

p.s

This article is written 4 months ago. Last week my inspiration and part of my soul, Joana, continued her journey and now is living among the angels in Heaven. I feel her energy and her support to stay focused on my goal – to help special parents.

 

 

 

 

Comments

  1. Anita

    Draga moja,potpuno osjećam tvoju priču❤️.Nakon što prođe očaj, strah, osjećaj neizvjesnosti …Priberrš se i shvatiš da tvoja snaga i volja prelazi na tvoje dijete. Odjednom to postane tvoja životna misija. Kako i pored svega učiniti svoj i život svog djeteta što sretnijim❤️

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