We were blessed with a third child; a girl after two boys, who unfortunately was diagnosed prenatally with a heart condition called Transposition of the Greater Arteries. She needed open heart surgery at just 4 weeks old. Post surgery she had complications, which resulted in a six and half week stay in hospital – ten days of that in the Intensive Care Unit. We were entirely thrown, the original time frame we were given for recovery post surgery was 14 to 16 days.
I have been lucky enough to have worked at the Royal Children’s Hospital (RCH) for several years in the education resource centre as part of the video team. What makes me even more lucky, is that is how my wife and I met. So now seeing both sides of the hospital, I want to try and give some advice to others, while telling our story.
TRUST YOUR INSTINCT!!! I’ll repeat, as it is the most important thing of all. Trust your instinct. No doctor, nurse or specialist is going to know you child like you do. If your child is behaving or reacting abnormally, they won’t know. They only see glimpses of your child and have no idea what is normal for them. You may feel overwhelmed by the whole situation, tired and emotional, but stick to your guns.
After her open heart surgery, Miss S kept having tummy issues, and was not pooing normally. I kept telling nurses, doctors, anyone that would listen really, about her poo not being right (I’m a dad, I say poo, I’m sure not going to say bowel movement). One nurse even said I was so obsessed she was going to get me the poo chart. I was told by senior nursing staff it was normal because of medication and reduced food intake. Unfortunately I was right.
When she finally came home, she had three emergency room visits in just two months, the final one via ambulance Easter Sunday night. She underwent another surgery, this time to remove a section of her lower intestines, resulting in her needing a colostomy bag for six weeks before a reversal operation could be performed (that was a learning curve). If you think something is wrong with your child, persist until you find someone who will listen to you and investigate further.
They are only human. Following on from trusting your instinct, I have to point out, that as good as any doctor, surgeon, nurse or specialist is, they are only human. I believe anyone that has chosen a career in taking care of others are angels. They are over worked. They may miss something, or rely on medication a little to much.
Little Miss S, on her second emergency admission, was given too much Morphine. My poor wife was there when this happened, as I went home from the emergency department as I started to feel unwell. They were finally moved from emergency to the ward at about 2:30AM.
Now somewhere along the line, the nurses on the ward told my wife that Miss S was in pain and needed morphine. She disagreed, but unable to think straight after spending all day and half the night in emergency, was persuaded that it was best for our daughter. Both my wife and Miss S were in quite a state the following day.
Once again, stick to your guns and know that the people advising you are only human, and may be just as exhausted as you are.
Knowledge is power. This is not true for all people, however for some, the more that you know and understand, the less scared and more reassured you feel.
Ask questions and find out as much as you can. By the same token, DON’T rely on Dr Google. Ask the professionals who are there to answer your questions, Googling will just scare the beejeebes out of you and most likely give you incorrect and unreliable information.
Little Miss S’ cardiologist, put us in contact with a mother and daughter before Miss S was even born. The daughter had gone though the same surgery 15 years ago, with the same surgeon. We were unsure if we wanted to meet with them at first, but it turned out to be a great relief to talk about the whole process, and speak to this 15 year old girl who was happy, healthy, well spoken and active. This small thing gave us great strength.
You may not be so fortunate in knowing about your child’s condition prior to having to face it, however don’t let that stop you from asking questions and gathering information. It helped us to feel less powerless in a situation where we felt as though we had no control and helped to remove the fear of the unknown.
There are more tips on how to survive a hospital stay in the second part (it was getting a bit long)
Till next time.