Tuesday, 6 September 2011

Ella's Story: In hospital for gastrostomy surgery, Day 1.

If you're a new reader of Ella's Story, you can see previous posts with more background information on her health problems here:

Or for a very long story short, here is a brief description of Ella's main chronic health struggles:
Ella was diagnosed with hemiplegic cerebral palsy in 2008 after suffering a stroke in-utero in 2007. She also suffers from epilepsy, thrombosis, dysphagia, developmental delay, speech processing disorder and Pseudohypoaldosteronism.
She currently has a naso-gastric feeding tube, and will be having a gastrostomy surgery to insert a feeding tube on, similar to mine, but into the stomach rather than jejunum. The surgery is scheduled for the morning of Wednesday, the 7th of September.

Ella will probably have to be in hospital for a week around the gastrostomy surgery. She was due to arrive at the Women's & Children's Hospital on Monday afternoon around 2pm. Since my girlfriend Sally had the day off from work and I was feeling relatively ok, we thought it would be good to go along with Ella, mum Emily and baby sister Scarlett to the hospital. I know from unfortunate personal experience how boring and unpleasant hospitals can be, so having a couple more friendly faces around is always good.

So we met up at the Jakas's house at about 1, after grabbing a few snacks and biscuits on the way through for the kids and anyone else to munch on. Hospital food tends to leave a lot to be desired, so food that actually looks and tastes like food is always a plus.

The girls were both still asleep when we arrived, and Emily showed us the special bike she has on loan for Ella for a few weeks, which can be pushed or pedaled, depending on the physical abilities of the child. 

 Here's one of Emily's photos of Ella on the bike.

 After getting the girls ready and strapped into their car seats, and packing bags of stuff into the cars, Emily headed off to the hospital, followed by Sally and I in my parent's Commodore I borrowed for the afternoon. 

On the way we stopped in to get some more summer PJs for Ella, as it's quite warm in the hospital at night. After getting a park about a block away and tipping a handful of silver coins into the parking meter for 56 minutes of parking, Sally and I gathered the bags and started walking over to the WCH entrance. After taking a while to get there, they walked out of a bathroom as we came in the front, which was pretty good timing really.

So we then all walked over to wait in line at the children's emergency department.

Although with Ella's fairly short attention span, uninteresting queue of people and a love of exploring new things, she was quickly off running around to play with the games on one of the walls. For some reason all the books were gone this time, on our previous visit when she pulled the tube out, the shelves were stacked full.

 After poking around the wall panels for a little while, Ella decided playing chasey would be more fun, and took off running down a couple of corridors, laughing all the way.

After running around for a bit we managed to get her settled down to an extent with some french fries and a random Cartoon Network show on the ER's big flatscreen TV.

Because of the stroke she had, Ella's left arm and leg aren't particularly strong, so she has a brace on her left leg to help with walking.

 By this point we had been waiting for Ella to get admitted for close to an hour, and both she and Scarlett were getting quite restless and upset, so Emily broke out the portable DVD player and put a Wiggles show on, which kept them entertained for another 20 minutes or so until we got called up into a ward. 

 The walk along to the ward was quite nice, the buildings look cool, with sunlight coming through to make some interesting shadow patterns on the walkway.

 Once we made it up to Ella's new room, we could drop and start to unpack the mound of bags we were all carrying. She seemed to quite like the pictures on the walls.

 After a quick inspection of her walls, we set up her bed with her hospital pillow, along with her favourite soft toys Jessie and Bullseye from Toy Story 2, and put the Wiggles DVD on again for Ella to watch while we sorted out the rest of the gear.

One of the nurses came in with some stickers, crayons and colouring-in pictures.

Meanwhile Scarlett was grabbing the DVD case, although she seemed to be more concerned with throwing it on the floor than actually watching anything.

Then Emily put some medical gloves on Ella for some amusement.

 She then found a doll to hold, at first very gently and traditionally...

 ...followed by holding it upside down and flying him around like a plane, then chewing on one of his feet.

 With the Wiggles DVD over, we put the Lion King on. I actually hadn't seen it for ages, and I quite enjoyed watching part of it again, and there were at least a few jokes that would have gone over my head as a kid when it first came out. And for a few interesting facts:

Released in 1994, it still stands as the highest grossing hand-drawn animation film in history, raking in over $780 million worldwide. Five people spent over two years animating the massive wildebeest stampede scene, which only goes 2 1/2 minutes.

So she settled in for a while with Sally to watch the movie, while a nurse came in to take some obs and give her an ID bracelet.

It was at this point that we started to discover that potentially dangerous incompetence from hospital and nursing staff isn't limited to the RAH. 

Merely spelling someone's name wrong on their charts is bad, even if only for consistency of records and general correctness. But when the name is misspelled to the extent that it becomes a rude insult word instead, that's stepping well over the line.

And you would think that would mean a new one, since her age is wrong too, but a bit of scribbling was enough apparently.

Not that it was really bad on its own as far as hospital errors go, but it turned out to be the least serious of a string of mistakes to follow that night after we left.

The nurse then did a few basic checks of her heart, height and blood pressure.

I'd been doing a fair bit of walking around with no water, so I thought it would be good to get a syringe and put some water through my jejunostomy tube, while Emily was giving Ella some water through her naso-gastric tube. At least being able to see me doing it will normalise the fact that she'll have pretty much the same thing on Wednesday, albeit just a small button opening, I still have a 20cm long tube hanging out of me. I could get a small button tube that would be much more convenient and less risky, but it involves going back into hospital for a thoroughly unpleasant and painful procedure, so I'm not exactly keen on going back any time soon if I don't have to.

It was hard not to think about the irony of me being a hospital visitor who hasn't been able to eat food for 11 months, and 'drinks' water through a tube, and the fact that if I didn't have it for the liquid Ensure feeds and water, I would have to be hospitalised myself rather quickly.

A little bit later Ella's dad Daniel came in after finishing work for the day as an ambulance officer. 

After putting on her new Minnie Mouse pyjamas, Ella settled back into bed with some hot chips while watching a Toy Story DVD.

 There's quite a nice view out of the window in her room, where you can see the spires of St. Peter's cathedral, Adelaide Oval and the Hyatt.

Scarlett had a bit of food as well while Ella finished her chips.

 At 6pm Sally and I thought it would be a good time to head off, since Daniel was there and his was mum on the way to stay with Ella for the night.

I think she may have been saying something along the lines of 'Where are you going?' here.

 So after a goodbye hug, we headed back to the car to go home.

 Unfortunately there were several potentially dangerous medical errors made with Ella later that night after we left. After Emily had given her some water through the tube at 3:30pm, by 11pm no doctors or nurses had given her any more water since, despite notes saying she was given water by a nurse at 6. The last 10 photos in Ella's room were taken between 5:50 and 6:08, and I'm pretty sure I can't see anyone else there. 

Ella needs a high fluid intake anyway, but also needs to be well hydrated for the surgery, so the fact that they let her go nearly 8 hours without any fluids is ridiculous. That doesn't even take into account that they didn't give Ella her anti-seizure medications either, which of course prevent seizures she would otherwise have without the meds.

And even though Ella has very clear instructions that she can't have any fluids because of her swallowing and aspirations problems, with a naso-gastric tube taped to her face as a reminder, the staff still thought it was appropriate to give her a glass of water instead.

And all this was after Emily organised instructions for Ella's care and medications last week, and still there were pretty critical mistakes being made, even though she hasn't actually had anything happen as yet. It also appears as if her ward notes were made up, with completely incorrect times for her admission and non-existent water flush.

I know that when I was at the RAH, the amount of mistakes they would make in regard to food, medications and general care was staggering. Despite writing in huge capital letters on the menu sheet that I was allergic to eggs, dairy and yeast, I received eggs for breakfast four days in a row, along with normal milk and cereal. And not normal eggs, I didn't know food could actually look so bad, this on a day where I was too sick to even drink water. I don't think anyone would eat that unless they were starving. And even then, I've seen cardboard that looks more appealing.

Medications were also given and not recorded in my charts, or containing things I was allergic to, leading to arguments about things like whether I had a blindingly painful intramuscular injection in my upper thigh or just a normal one in my arm. Or a few minutes after I had my naso-gastric tube inserted in October last year and was choking on it and could hardly talk, following nearly a week with almost no food, two psychiatrists thought it appropriate to drag me off to talk about high school for an hour.

So after a lengthy phone call from Emily to the ward regarding her care later that night, Ella should be ok now with grandma staying overnight, although the nurse who was in charge will rightfully get an earful tomorrow morning about stuffing everything up. Hearing about what they did certainly made my blood boil.

If you're reading this as a parent of young children, Emily is part of a three person team running a small boutique kids' clothing and accessories business called 'Original Mini Moo', along with two other mums. They have 9 children between  them; three with special needs of various descriptions, including Ella, and hand-make their merchandise at home when they have a little bit of time to spare.

So if you're after some handmade clothes, toys, hats or rugs for your little ones, and want to support some busy and hard-working mothers, you can browse a selection of items for sale on their Facebook page, just click on the Mini Moo logo or this link: https://www.facebook.com/pages/Mini-Moo/189892247687519

You can email them for further information at mini.moo.store@gmail.com

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