Ella's Story: Hospital

If you're not familiar with Ella's story, have a look at these earlier posts for more of the background info: 

http://carscameraschronicillness.blogspot.com/search/label/Ella%27s%20Story 

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 soon will likely be having a gastrostomy surgery to insert a feeding tube, similar to mine, but into the stomach rather than jejunum.

Unfortunately Ella is going through a rather rough patch at the moment to say the very least. This photo was taken by her mum Emily earlier today.

Photographer: Emily Jakas

Date: June 13th, 2011

Camera: iPhone

As described in the earlier post, Ella was admitted to hospital with pneumonia last week. But some tests over the past few days have shown that her lungs are also infected with two viruses, as well as Methicillin-Resistant Staphylococcus Aureus (MRSA), and Escherichia coli (E. Coli). And this is on top of the paragraph of health problems mentioned above, which means she may be in hospital for a couple of weeks while they pump in medications through her Peripherally Inserted Central Catheter (PICC) line, shown below:

Photographer: Emily Jakas

Date: June 9th, 2011 

Camera: iPhone

The lung infections mean her gastrostomy surgery will be postponed for the time being.

And as if that wasn't enough, her younger sister Scarlett had to be taken to the ER tonight, after suffering from a high fever and trouble breathing, which is due to some form of influenza, according to tests so far. And on top of all that, the family has to move house this weekend.

Fortunately, a couple of my better health days recently meant that my girlfriend Sally and I were able to visit the family at home a couple of weeks ago, while Ella was doing a lot better than she is at the moment. It was also the first time in around a year we had been able visit them at their house, due to me being so horrendously sick for the last year as well.

Below are some photos from the visits, including a few from the intro post, with everyone having a better time than in the two hospital photos above. But there's no way to avoid frequent treatments and medications for either of us. It's just part of daily life now, although my tube is currently a lot more subtle than Ella's just at the moment, usually hidden underneath clothes to an extent. 

So between Daniel, Emily, Sally and I, casually syringing fluids through feeding tubes in the middle of a conversation pretty frequently is quite normal by now. If you do something enough times, even if it's quite bad or shocking at first, your brain just gets bored and normalises things, to a certain extent anyway. Even though many of my other friends know what's happening with me, I can understanding how injecting water and meds through a tube could be a bit confronting or awkward, so I don't make a point of doing it in front of people, since it's a very odd occurrence for the majority of the population. But if everyone else is doing it, you're just part of the cool crowd. Sort of.

But anyway, on to the pictures...

Ella and little sister Scarlett.

 Photographer: Rohan Phillips
Date: May 27th, 2011
Camera: Nikon D300
Lens: Nikkor 17-55mm f/2.8G IF-ED
Exposure: 1/30 @ f/2.8, ISO 3200 

For some reason Ella decided sticking a plastic bag over people's heads was hilarious. And to be fair, she was right. It was.

 Photographer: Rohan Phillips

Date: May 27th, 2011 
Camera: Nikon D300  
Lens: Nikkor 17-55mm f/2.8G IF-ED  
Exposure: 1/60 @ f/2.8, ISO 3200 

 

A few of Ella's regular evening medications. Two anti-seizure meds, some sorbitol and a water flush.

 Photographer: Rohan Phillips 
Date: May 27th, 2011  
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/40 @ f/2.8, ISO 1600 

 

Daniel delivering the meds slowly through her naso-gastric tube while she watches TV. 

 Photographer: Rohan Phillips 
Date: May 27th, 2011  
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/20 @ f/2.8, ISO 1600 

  

  Photographer: Rohan Phillips 
Date: May 27th, 2011  
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/25 @ f/2.8, ISO 3200 

 

Sally and Ella watching TV together. 

Photographer: Rohan Phillips 
Date: May 27th, 2011  
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/30 @ f/2.8, ISO 3200 

 

Trying to convince dad the Wiggles DVDs are much more entertaining than what was on TV. (She actually got to meet them in person recently)

Photographer: Rohan Phillips 
Date: May 27th, 2011   
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/30 @ f/2.8, ISO 3200 

 

  Getting a salty fluid mask to help her cough up gunk from her lungs.

 Photographer: Rohan Phillips 
Date: May 29th, 2011   
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/50 @ f/2.8, ISO 3200 

 

Daniel checking how Ella's lungs sound after the mask and coughing up some mucus.

  Photographer: Rohan Phillips 
Date: May 29th, 2011  
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED 
Exposure: 1/50 @ f/2.8, ISO 3200 

Ella checking that her dad's brain is still working ok. The results were inconclusive.

Photographer: Rohan Phillips 
Date: May 29th, 2011   
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/60 @ f/2.8, ISO 3200 

 

Ella making sure Sally still has a pulse. Her professional medical opinion: Yes.

Photographer: Rohan Phillips 
Date: May 29th, 2011   
Camera: Nikon D300   
Lens: Nikkor 17-55mm f/2.8G IF-ED   
Exposure: 1/50 @ f/2.8, ISO 3200 

So here's hoping and praying that there will be less hospital photos and more fun photos for everybody in the future.

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