Wednesday, October 26, 2011


I feel like I am starting to lose control of Ruby's health. Not in an end of the world kind of way, but little bit by little bit until it turns into an avalanche. My focus on her diet has always given me the self confidence boost that I am managing a part of her CF well. She has dropped from the 20th percentile to the 12th percentile. Her vitamin levels have dropped again, putting her generalhealth at risk. She is back on anti-biotics, fighting a bug plus a staph infection. Did I not use enough Glenn 20? Her excema has flared up and she is itchy. I can't seem to make her comfortable. I can't seem to make her happy. If she's not happy, I'm not happy. The harmony has gone. How do I fix this? Will I regain control? Will my family ever get a good night sleep again?
Three different people told me this yesterday:

And if three people say it, then it must be true, right?

Tuesday, October 4, 2011

Our June Hospital Admission

This blog entry has been a long time coming. So many details, so many emotions that it just seemed like too much to write down. But the specifics are starting to get blurry, so I guess it's time.

The day started like normal. Ruby was happy and eating well. But just before I gave her her afternoon bottle, she did one of those huge projectile vomits like you see on Australia's Funniest Home Video Show. She seemed ok, she didn't cry, but she wasn't interested in her bottle either. Same with dinner later, not very interested in that either but she did take some milk. Which was also projectile vomited shortly after. Nothing is simple with CF and you don't have the luxury of waiting it out, or saying "see how it goes". So we called the CF fellow who said we need to go to emergency at the local hospital for an x-ray to rule out a bowel blockage. (not Westmead)

Sounded easy enough. Hospital bag (always packed, ready to go) in the car, Pop over to watch Eliza and off we go. Well, as any parent whose taken their kid to emergency knows, we entered a timewarp. We got seen to quite quickly and were put into a separate cubicle thingy. We told them why what we were there for and that having CF meant that Ruby was susceptible to blockages in the bowel. Then we sat and waited. Ruby just slept most of the time, only waking when her obs were being taken.  A dr saw us a few hours later. We re-iterated again that we just needed an x-ray to see if there was a blockage or not. Not as easy as that. Ruby's tummy was squeezed by every second person who came to see us. I realised that it had then been 24 hours since her last poo and I expressed again that I was worried about a blockage.

We were told multiple times that kids pick things up, and gastro was going around.
Waiting waiting waining in emergency

It was 2.00 in the morning when we were taken for an x-ray. Craig was supposed to leave for his new work position at 4.30 in the morning. Needless to say, he took the day off.
The x-rays were inconclusive, her urine sample came back clear for UTI. So now the dr left it up to us. Go home and see how she goes or get admitted to further observation. Ruby chose that moment to projective vomit again which made that decision easy. Off to the ward we went.

Using a pillow so she didn't choke on her  vomit in her sleep
And that's when I really felt like I was running under water. Intentionally or not, I was made to feel like I was over-reacting. I can sort of see why. She had vomited twice, was off her food, had a slight temp and hadn't done a poo for a day. BUT SHE HAS CF! Nobody seemed to understand that bit. Every question was fobbed off

"have you contacted her CF team at Westmead?", "oh, the dr will do that"

"she is not keeping anything down, should we start IV's? (CFers are very susceptible to dehydration)" "oh, the drs don't think it's necessary yet"

I called her CF team who said they were keeping tabs on her, but unless the hospital said to transfer her, then she should stay where she is.

Two nights we were there, sweet FA happened. I have no idea what they were waiting for, but I have never felt so frustrated or helpless before.

Then her vomit had bile in it. It was like a slap in the face to me. That was how our whole CF journey started. Bile at 12 hours old, bowel surgery not much later.

So I turned into mama bear. I demanded the nurse to call a dr for me. She said they were just about to do the rounds and will be here soon. I said it was urgent and we need help now. So she disappeared and came back and said I would be first to be seen. Dr came in 5 minutes later and said she vomit was probably that colour because her stomach was empty. I was a bit rude then. It pretty much went like this:

"That vomit is not normal. Last time she had that, she had surgery so excuse me for being one of "those" mums. She hasn't done a poo for 2 days, she is vomiting bile, she hasn't kept anything down, and she is not even on IVs. Do you know how HARD I work to keep weight on her? I need her CF team at Westmead to know. I think they may want to assess her. Has anyone even called them?"

She gave me a hard stare, said she would get IV's started and then call Ruby's CF team. Then turned and left. And I finally felt like something was happening, especially when the nurse got the IV started.
Finally got IV's started

Dr Glare came back in about 3 minutes later and said very bluntly "Westmead called, she's getting transferred". I was a bit shocked, "what now?". "yes, that ambulance is on it's way". And she just left.

I found out later that the staff though I had called Westmead, but in fact Westmead called for a progress report and organised the transfer as soon as they heard about the bile.

So a few hours later we were settled in our room at Westmead. Within half an hour of being there, we were seen by her whole team, had bloods taken and had a colonoscopy done.

The transfer to Westmead
NG tubes fitted, pulled out, re-inserted...X-rays, ultrasounds...

Needless to say, it was horrible. Ruby became withdrawn. She would cry whenever the door to her room opened. She whimpered in her sleep, she stared into space when she was awake.

The last option we had before using surgery was to feed her a solution through her NG tube which was potent enough to break through the blockage. But not without her vomiting it up the first round. I can't even imagine what it was like to bring that stuff up. But it worked, and finally, she pooed. Phew...Yay for shit! Observed for another day, and we were right to go. She even started smiling at a few of the med staff before we left which I never thought would happen!

After the blockage finally moved

What a heartbreaking time it was. Ruby was 9 months. Old enough to know that painful things were happening to her, but not old enough to understand why. As a mum of a child with a chronic illness, it's just going to be a part of life where I have to hold my child down while strangers are hurting her. A horrible part of life, but unavoidable. I don't want Ruby to get used to this type of thing. I wish that the next admission wouldn't be for a long long time.

Next time...because there will be a next time...we go straight to Westmead.

Finally able to eat again!