Advocating for Your Child in Hospital {guest post}

I first met Peggy when we both attended the IAHP course in Melbourne in 2013, and was able to snuggle her very gorgeous (then) five month old baby girl.  Although in different circumstances, little did we know that we would both be facing a Leukaemia challenge in our future. It was obvious from our first contact that Peggy has a strength of character and love for her family that far surpasses any obstacle and she appears to take each challenge in her stride, with grace and positivity, but also grit and determination. I admire many of the posts she has written on her own blog and am honoured she was able to share some of her wisdom here today. ~ Annie x

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So I’m not exactly a ball breaker. I think one of the things I’m known for generally is being pretty easy going and laid back – unless you machine wash my hand stuff or load the dishwasher incorrectly, then you’ll get the silent treatment.

However, this modus operandi has been called into question over the past couple of years, and I’ve had to really re-evaluate how I see myself in relation to the people I would normally just listen to without question.

The catalyst for all this? Jacinta and her many health issues. Just to give a quick background, prior to giving birth to Jacinta, the strongest medication any of my children had had was a dose of panadol for my second daughter when she had a pulled elbow and the doctor was trying to coax it back into place.

I never dreamed I’d have a child in ICU, twice. I never dreamed I’d be told I couldn’t breastfeed my newborn. I never dreamed I’d have a child nearly on life support after open heart surgery. I never dreamed I’d be consenting to chemotherapy for my child. I call Jacinta my “toxic baby”.

So I’ve learned a few lessons along the way and I thought I’d share them with you. Here are a few basic questions I had and the answers I’ve found on-the-job.

1. What is my job?

It took me a while to feel comfortable with this role, but your job is the same as at home: to keep your child safe, healthy and thriving. When the hospital environment is unfamiliar, it might feel easier to relinquish this role, but the first error by a doctor or nurse will drive it home again. The sooner you find your feet and be the person running your child’s care, the better you’ll feel about the hospital stay and about taking care of him/her when recouperating at home. In my case, the first time I realised there could be errors made was when the nurse didn’t hear that a drug was meant to be ceased when I did but wasn’t sure which was which. Nowadays I’d have known the drug name and what it was for so I’d have queried giving it, but I didn’t, so Jacinta’s blood pressure dropped super-low overnight and she had an emergency called to get her out of danger. From then on I was on top of everything and have intercepted errors on several occasions and corrected a nurse in another occasion for doing something traumatic without my consent or knowledge.

2. What is the monitor all about?

You’ll probably have a probe attached to your child – either stickers on their hand or foot or what’s called a ‘crocodile’ on their finger or toe. This shines a light through the body part and works out how many oxygenated cells there are per 100 and it puts that number on the screen. Every patient will have a different ideal range. Find out yours by listening to the doctor telling the nurse. If the nurse sets the alarm parameters wrong so it goes off all the time for no reason, buzz the nurse and let them know. There are parameters for breathing rate, heart rate and blood oxygen saturation. They call this one ‘sats’, short for saturation. You’ll get to know yours.

On the picture above, the green -?- is where the sats number would go and the yellow -?- is where the heart rate number would go. The green line is worth noticing. It shows the pulsing of the blood through the finger. If it is all over the place, you can’t trust the other two numbers. If it is steady in size and distance between peaks and troughs then the other numbers are probably fine. Remember though, the ICU nurse told us when Jacinta was a couple of days old, “don’t look at the monitor, look at the baby”. Wise words.

3. When should I buzz the nurse?

Any time you need something, have a question or want to tell them something non-urgent. If your child needs urgent attention because they’re in serious danger obviously press the emergency button but it’s more likely that the nurse will press that or your three year old will when you’re not looking. Things like “our dinner hasn’t arrived”, “we’re out of supplies”, “can we have the meds a bit earlier please?” (you won’t always get a ‘yes’ to that one), “aren’t we due some chemo about now?”, “this thing is beeping for no apparent reason”, are all buzzer-type things. They’d prefer you stay put and buzz than interrupt them in the corridor while they’re attending to someone else. Don’t feel like you’re being a pest, they’ll answer your buzz when they’re ready.

4. Who is in charge?

You. You have enlisted these medical professionals. The surgery consent form you sign says you can decline the surgery at any point until the very last minute. You can decline medications. I often decline charted laxatives or pain killers that aren’t necessary, even if the nurse has already drawn them up. If I don’t understand anything, I ask for an explanation before we proceed. You can use your own preferred remedies, in consultation with pharmacy, who said ‘yes’ to me for my teething remedy. You can bring in your naturopath. (Run it past the doctor and make sure nothing will conflict with what they’re doing.) We generally let the doctors get on with it, but we query, query, query anything we think sounds inappropriate.

The thing to remember is that the doctor knows hearts, brains, ears, cancer, etc. YOU know your child and you’ve seen everything that’s happened on the ward. Handover only goes back 24-48 hours and if something odd happened a week ago you might be the only person who remembers. They don’t study the complete history before each shift. There isn’t time. Sometimes you are the only one who remembers what you were there for and why each direction-change happened. It’s better to make them stop and think, and be wrong, than to let them make a mistake.

And then you’ll have done everything you can to keep your child safe, healthy and thriving.

Peggy is Mum to three young ladies, Jacinta being the youngest. She was born in January 2013 and diagnosed with Trisomy 21 and a heart condition that night. Jacinta has spent about half her life in hospital. Peggy has spent almost half Jacinta’s life in hospital with her! You can read more about Jacinta at their blog, Conquering Down Syndrome.