Wednesday, 7 September 2011

Ella's Story: In hospital for gastrostomy surgery, Day 2.

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 currently scheduled for around 10am Wednesday morning.

After having another day where I was lucky enough to be feeling able to get out and do things, I went for an afternoon drive in the hills in my Cefiro. The weather wasn't the greatest, with lots of rain and even hail at one point, but it was good to get out and about for a nice drive and some photos.

I came back through Norton Summit and into the CBD at around 6, so I thought it might be a good time to drop in to see Daniel and Ella before her surgery. After making my way into the WCH carpark, I parked a few levels up, and then made the walk across the road to the main entrance, fairly quickly as it was bitingly cold already.

All photos taken with a Nikon D300 and Nikkor 50mm f/1.4G lens.

It was nice getting inside and out of the brisk night air, and taking the lift up to the 4th floor, I regained some feeling in my ears and hands.

I'm not sure if it's because of my own bad hospital memories, but compared to the day before, the long walk down the corridors to Ella's ward looked rather foreboding and ominous.

After winding my way around the hallways, I arrived at the ward entrance.

After leaving them in the car on Monday, this time I brought along a big box with small packets of chips, as well as a couple of little sparkly books that my mum gave to Ella. 

Opening the door to her room, after she said hello, the next words were 'Chippies! Chippies!' when she saw the box I was carrying. She quickly reached in and pulled out a bag of salt and vinegar chips.

As I was opening the bag for her, Ella asked 'Where's Sally? Where's Sally?'.
 I explained that she was catching up with a friend at home, and it was just me today. I gave the chips back to her, and she happily munched away on them for a while, as she watched some episodes of 'Timmy Time' on her little DVD player. Daniel slowly pushed some water through the tube at the same time to keep her fluids up.

As usual, Ella had Bullseye the horse by her side on the bed.

After a little while she finished the salt and vinegar chips, which weren't quite enough for her so she started on a bag of plain chips. She had enough of lying down for a bit, so she got up to watch Timmy Time standing on the other side of her bed.

I can't remember what happened in this scene, but Ella found it pretty funny.

A few minutes later a nurse came in to take some obs, she seemed quite nice and helpful. First she put a sensor on her finger to take pulse and oxygen saturation readings. After having it done three times a day for the seven weeks I was in hospital last year, I found you can raise or lower the oxygen reading by breathing deeply or holding your breath. Not the most accurate if they're measuring at the time, but it's more entertaining if you make it interactive.

Next was a sign that Ella has a lot of experience with doctors, hospitals and nurses taking obs. After looking in the basket, Ella grabbed the digital thermometer and stuck it in her ear to take her own temperature.

Ella was a bit jealous that the nurse was wearing gloves, so she took one from the box to put on Ella's hand. 

She got a bit upset that the nurse was holding her arm, so she went over to Daniel for a hug while he talked to the nurse about her medications.

We soon managed to settle her back into bed with another episode of Timmy Time, nestled between Bullseye and Jessie.

As it was getting close to 8:30 pm, Daniel turned off the main light to get Ella ready to go off to sleep, and made a call to mum Emily to let her know what was happening, and when her surgery was likely to go ahead the next morning.

The nurse came back a bit later with Ella's nightly medications, including the seizure meds, so things were going better on that front than the night before. She said that Ella was fourth in line for the next morning's surgery, which was supposed to be around 10am, so she needed to be fasted from any food or water from 2am onwards.

With the medications put down the tube and flushed, it was time for a cuddle with dad before she went off to sleep for the night.

After getting her tucked into bed and turning the light off, Ella got a bit upset again, but within 5 minutes she had drifted off to sleep. I quietly made my way out of the room, back down the semingly deserted hospital corridors and back to the carpark to head home.

So hopefully that was the last time I'll see Ella with the feeding tube coming out of her nose. The surgery for a gastrostomy is supposed to be much easier to perform compared my jejunostomy, and significantly less painful afterwards as well which is good. I was on three doses of Panamax per day for a couple of weeks to take the edge off the pain after my surgery, not helped by the fact that the opening they made was in a spot where any leg or torso movement used the muscles around the tube which hurt quite a lot.

It will be good once the surgery is completed and Ella recovers enough to go back home soon. Hospital really isn't a very nice place to be, but with loving family and friends, and plenty of DVDs to keep her entertained, Ella is doing pretty well considering. 

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:

You can email them for further information at


  1. I love your stories Rohan, they will be a great record for Ella as well.

  2. Thanks. :) I'm sure it will be interesting for her to see how far things have come when she's a bit older.