I am the mum of a sick kid, now what??

One month ago I was the mum of a happy, healthy ten year old girl. Then our world changed. She started swelling up.

First we noticed bags under her eyes, then they became darker and the rest of her body started looking puffy too. After a week of this we decided it was time to visit the doctor. Worried mum syndrome started to kick in. What was happening? My gut said kidney issues due to dark areas under the eyes.

The doctor ordered blood tests. That evening we got a call to come back urgently tomorrow. At this stage the doctor did not know what was happening but blood tests showed something was. More blood tests were done and this time urine as well.

This was the Thursday before Easter so nothing could be tested until Tuesday and we wouldn’t know results until Wednesday.

During this time I kept saying to myself, we do not know what this is, it could be anything. Let’s stay positive until we have a diagnosis. I had to stop googling as it was just getting me upset. I reached out to my support network so I could have someone to talk to outside of the home without worrying my daughter. I reached for my essential oils to support me emotionally through this time of uncertainty.

Wednesday came and the doctor said all the tests were pointing to a kidney issue and that we needed to see a specialist. She personally called the three pediatric kidney specialists in Perth and arranged us an appointment for Monday. More waiting. We were so happy we were getting in so quick and at the same time worried we were getting in so quick as that meant it was serious.

Monday morning we had the appointment with the specialist. He said he suspected he knew what she had. I am not sure if he put a name to it at this stage. He also said it was rare and he hadn’t seen it in a while as it was not his specialty so he was going to refer us to a specialist at the local children’s hospital – PMH.

We got home at 11am and had a call at noon to say our appointment was 230pm. Luckily my husband could leave work to collect our son from school while I went in for the appointment with my daughter.

They put her on the scales and she was 55kg! This was my ten year daughter who we had weighed for fun two months ago at approximately 45kg! She had over 10kg of fluid that had collected in her body! She had fluid in her lungs. They confirmed her diagnosis of Nephrotic Syndrome and admitted her then and there.

That started a week of being in hospital. It was an interesting week as friends would sympathise, saying how awful it was that we were in hospital. All I could think though was that we were exactly where we needed to be for her to get the treatment she needed. I was grateful that due to my essential oils business that I spent the last few years building from home I could spend that week with her without having to ask anyone for permission.

During this week I put in strategies to support myself and my daughter.

·       I kept my attitude positive. We were where we needed to be.

·       I asked for what I needed. For me this was for food to be bought in for me so I didn’t have to leave her to get it or alternatively eat rubbish food.

·       I made the most of parents facilities to have some time out, grab a cup of tea, talk to other parents

·       I was always my child’s advocate, asking questions so I understood but always asking her if she understood and if not getting doctors and nurses to explain it to her in her language

·       I used my essential oils to calm and relax me at night and to energise me during the day (hospitals are not the best place to sleep)

·       I was extremely grateful for the medical team looking after my daughter and let them know this

·       Daily I took time to ground, to meditate, to reflect.

Now we are home and we are leaning to live with a new reality, a reality where we collect her urine first thing in a small pot and test the protein, a reality where we weigh her daily, a reality where she is on medication to help her into remission that also makes her starving hungry and messes with her emotions, a reality where what we eat and drink looks different.

I am being extra vigilant about looking after myself so I can look after my daughter. I am eating well and making sure to get time out. I am taking a top-quality supplement. I am doing my research into this condition so I can be my daughters best advocate and support.

We are a team though, now more than ever. We research low salt options together. She loves cooking and now makes her own bread and treats. Who knew there was so much salt in bread and cookies! We talk about what has happened, what is happening now and what may happen in the future. I know that if I need it there are organisations that can provide age appropriate information.

I have extreme gratitude to the medical system who are supporting us through this new reality.

I hope this BLOG gives you hope. A diagnosis of an illness is not the end of the world, it is the start of a new interesting journey.

 

 

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