Wednesday, 14 September 2011

Ella's Story: Happy at home again.

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.

 After months of having a naso-gastric feeding tube, Ella finally had surgery for a gastrostomy on Wednesday the 7th of September. After coming home on Thursday night, Friday was the first full day at home for Ella. 

She was really not doing well at all Friday night as I mentioned in the previous post, and Saturday was even worse, to the point where an ambulance was nearly called for her.

But she picked up a bit on the Saturday night, and after being given Hydralite through her gastrostomy tube several times overnight, woke up Sunday morning pretty much back to her old self. After a very rough week to say the least, hearing she was much better was great to hear.

After visiting our respective grandmas and Ikea for a few bits and pieces, my girlfriend Sally and I headed over to the Charcoal Chicken shop at Grange. Knowing that Ella was better, we both wanted to see her, particularly as she had been asking to see Sally the past few times I'd visited. So after a quick call to ask Daniel & Emily about what sort of food to get, we went in to order.

After collecting the burgers, chips and other assorted deep-fried food, we headed over to the Jakas's house.

In stark contrast to the very weak and drawn-looking Ella I saw on Friday, she was immediately looking much better with spare energy and smiles, which had both been missing for the past week.

Ella came up to the kitchen to grab a few chips, before going back to join Scarlett on Baba's (grandma's) lap on the lounge.

Scarlett continued her tradition of doing weird and funny things.

While Daniel and Sally were busy with their steak sandwich and chicken burger respectively, Emily grabbed Ella's hand, with a Chiko roll in the other, and gave her a laugh by spinning around in circles.

Then for some more amusement, Emily started playing hide and seek with Ella, ducking behind one of the lounges.

Got your nose!

It was so good seeing Ella pretty much back to her old self, smiling and laughing like usual. It broke my heart seeing her so sick and in so much pain after the surgery, not even cracking a smile.

After my solo hospital visits where Ella kept asking about Sally, Ella was very pleased to see her, and went up for a hug once she'd finished her burger.

Ella had definitely missed her Sally hugs (which are excellent), because as soon as she pulled away, Ella reached out her arms again, saying 'Huggies!'

So Sally scooped her up, and went over to the lounge to watch TV and have a proper cuddle after not seeing each other for a while.

Meanwhile, Daniel was helping Scarlett walk on the ceiling.

To prevent any infections or problems with the gastrostomy wound site, it needs to be cleaned fairly regularly, in addition to the button being rotated once a day.

Both Ella and Scarlett made sure they had a taste test of their dad's food.

She then went back to mum Emily for another hug.

There's quite a big height difference between Scarlett and Ella.

After getting ready for bed and into her PJs, Ella settled in again with Sally to watch the Mickey Mouse Clubhouse.

While they were watching TV, Daniel started getting some of Ella's nightly medications ready.

Emily then pushed the medication through Ella's tube from the syringes.

I then swapped spots with Sally, while Emily syringed some water through the tube to keep Ella's fluids up.

Scarlett was sitting down on the floor watching TV as well.

After getting the water in, it was getting close to bedtime for Ella, so she went over to Daniel for a cuddle before bed while we watched 'Timmy Time'. It's pretty funny for a kids' show. 

Before too long, Ella had drifted peacefully off to sleep, and Emily gently carried her off to bed. 

Since the rest of us were yawning as well, Sally and I headed off shortly after, feeling much better after seeing how well Ella was doing.

I'm sure there will be many more fun and happy photos of the Jakas family to come.

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