When I was in high school, I got my first real part-time job at a Garden Centre. While my friends were working in supermarkets or fast food restaurants, I got to hang out in fresh air with flowers. I loved it!

I learnt many lessons in that job, which I kept after high school and throughout my university studies.

There was of course the value of good customer service, as well as how to care for plants, what would grow well where and what might be wrong with someone’s plant or tree.

I also learnt that I didn’t know everything. If I guessed as to why someone’s basil wasn’t growing, or their tomatoes were going purple, it would inevitably come back to bite me.

I didn’t have all the answers, and the greatest power I held in that position, was the ability to say to someone, “I don’t know, but I can find out for you.”

Even if I wasn’t able to tell someone why their favourite rose bush had suddenly displayed green and yellow spots, I revelled in the fact that I could call for a horticulturist who did.

If they didn’t know, the horticulturist in turn would say “I don’t know, but I can find out for you”. This was in the days before Google was invented, and as such, the horticulturist would pour through volumes of plant related reference books and question the other people they worked with. They would figure out what was wrong, come up with a solution, and contact the customer with their findings.

This was in relation to a rose bush.

 

At four weeks old, my daughter had her first life-saving open heart surgery. Afterwards, she faced a myriad of complications.

My husband and I were constantly asking questions, trying to get our heads around what was happening. Just when we felt like we’d finally gotten to understand something, we’d ask another doctor or nurse and they’d look at us blankly and tell us we had it all wrong, we had been misinformed, again.

Our daughter was in hospital for 6 weeks post op, and although we were so excited when we were finally able to bring her home, we knew that something still wasn’t right.

While she was still in hospital we questioned; Why is our daughter vomiting up every second feed? Why isn’t she passing any bowel movements? Why isn’t she putting on weight?

We asked, and we asked, and we were told; ‘oh it’s probably just because of the morphine’ ‘oh that’s probably just related to the surgery somehow’, ‘it’s likely to do with her heart condition’.

After she was discharged, we ended up in our local emergency department twice, she had a short hospital stay, where I was told she was in pain and she was given morphine, which made her decidedly worse.

We continually questioned her cardiologist at the time (who insisted that he was also capable of being her paediatrician). Continually we were given answers, that weren’t really answers. ‘She’s a little pale, maybe she needs iron’, ‘keep giving her laxatives’.

On our third trip to emergency, via ambulance one evening, five weeks after she was discharged from hospital, I was at the end of my rope.

My tiny three month old daughter was screaming, and vomiting. I held her on her side to help her breathe, a nurse walked past us in emergency and made some comment to the effect of ‘it looks like you know what you’re doing’ and kept walking.

We were alone in emergency, the drip in my daughter’s arm  stopped working and the blood began to flow back down the tube, and out of the machine and onto the floor. I called out for help, I was unable to reach a call button. It wasn’t until 5-10 minutes later and a growing puddle of blood, that someone came to help.

She was moved to the wards, given more blood tests, more standard procedures, more questions not answered. By morning neither one of us had slept, and her bed was covered in blood and vomit. One nurse during the night had made a comment ‘it always happens in the middle of the night doesn’t it?’. I was exasperated. I was supposedly in the one of the best paediatric hospitals in Australia, and there was no one to help.

In the morning, my husband, who was caring for our two young boys, and had been relieved by my parents, came to be with our daughter so I could go home and re-group. A friend drove me home, I was covered in blood and vomit and I could barely move.

 

When I walked in the door at home, my husband called me. She had been moved to ICU, they were doing tests.

Finally, after my daughter had suffered so so much, someone had said “I don’t know, but I’ll find out for you”.

She was rushed into surgery and had a section of her bowel removed. She had a temporary stoma (colostomy) put in, and within a week, she was keeping food down and finally starting to put on weight, it was like a miracle had occurred.

While she was recovering in hospital from this surgery, I received a call from her cardiologist. We had spent weeks telling anyone who would listen that something wasn’t right, what her cardiologist said in that phone call, I’ll never forget, he said to me, “I knew something was wrong”. Again, I was exasperated and completely lost for words, he is no longer our daughter’s cardiologist.

A child isn’t a rose bush, however since starting this blog, I have become horrified by the fact that the most common piece of advice parents give to other parents with a sick child is ‘trust your instincts’ and ‘don’t stop until you have answers’.

Why is this happening? Why aren’t parent’s concerns being taken seriously? Why aren’t medical professionals doing everything in their power to find the answers?

Who is there to say; ‘I don’t know, but I’ll find out for you’ ?

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