Saturday, 27 August 2011

Ella's Story: Scarlett's 1st birthday and a visit to the ER.

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 soon will be having a gastrostomy surgery to insert a feeding tube, similar to mine, but into the stomach rather than jejunum. The surgery is currently scheduled for the 7th of September.

August 17th marked the first birthday of Ella's younger sister Scarlett, who in the few weeks leading up to her birthday, started being able to walk around by herself. She currently has a way of moving at times which is hard to describe. It's not walking or crawling, but she kind of drags herself across the room on one knee, as you can see in this photo below, taken on the 13th.

My girlfriend Sally and I were shopping at Toys R Us almost exactly a month before her birthday, when I spotted something that would make a very cool first birthday present for Scarlett; a Lightning McQueen ride-on car from the Pixar movie 'Cars'. So after thinking about it for a few minutes I decided to get one for her.

Fast forward a month and we arrived at the Jakas household with the rather sizeable present. I had mentioned to Ella's parents Daniel & Emily that our present was big, but they were still surprised to see it, with Emily inquiring as to what on earth was beneath the wrapping.

With family gathered around, Scarlett sat down on the lounge with grandma and grandpa to help open her presents.

Most photos taken with a Nikon D300 and Nikkor 17-55mm f/2.8 lens, and a few with a Nikon D90 and Nikkor 50mm f/1.4D lens. Since most of the time it was quite dark, most of these shots were taken at 1600 ISO, going up to 6400 outside in the dark.

Ella made a subtle indication that she thought Scarlett should be opening our present first, by pushing the big box across the room to where Scarlett was.

Since Scarlett was already holding a wrapped present, Ella was more than happy to assist her with opening that.

But at 3 years old, patience with presents isn't usually a strong point, and she couldn't resist peeling the wrapping off the top of the Lightning McQueen box.

She was soon joined by Scarlett.

Judging by her expression, Scarlett seems rather pleased with her new wheels.

Although the car was just a plain body shell, this didn't stop a mad scramble for the driver's seat between Ella, Scarlett and their cousins almost as soon as Emily took it out of the box.

After playing around with the car, it was time for the birthday cake, a cool ladybird one that Emily made.

Scarlett was a bit young for blowing out the candle, so Ella did it for her.

Scarlett on the lounge enjoying her birthday cake with grandpa.

After the cake everyone settled down a bit and relaxed, and by about 10 to 8 everyone had left apart from Sally and I. Exhausted from a full day of work and the party, dad Daniel was sitting peacefully on the lounge, with Scarlett on his lap having a bottle of formula, while Emily was giving Ella a shower just before she headed off to bed.

At least, that was the plan. Which would unfortunately change to something entirely different and much less pleasant a few minutes later. There's a gap in the photos here for obvious reasons.

So while Sally and I were sitting on the floor, me in the same position I took the above photo, and Sally near Scarlett, Emily came back in with Ella, and stood next to Scarlett, who had just finished her bottle. Now this next part happened so fast that none of us are sure exactly what happened, although I think I was the only one actually looking at the time.

From what I remember, I think Scarlett sat up a bit, grabbed Ella's naso-gastric tube and yanked it. She pulled it out maybe 10cm, and Ella, quickly reacting to the sensation, grabbed the tube and pulled it out completely.

 Despite the fact that Daniel, Emily and Sally were within arm's length of her, and I was no more than a couple of metres away, none of us even had time to react before the tube was all the way out. We all froze for a few seconds in shock, looking at each other with various versions of 'Oh crap.'

Ella didn't react much at first besides looking a bit puzzled at us, and then down at her hand. She half-heartedly brought the end of the tube back up to her nose as if to put it back in, and not sure what to do she looked at us again, and I went over to have a look at it. Again she looked at me, then back at the tube in her hand with a puzzled expression, and motioning towards her nose again. By this point I'd realised that it wasn't going to go back in, and I sat back down on the floor again with Sally and Emily. We were all wearing concerned expressions by now, and Ella looked at each one of us, then back at the tube.

She knew something was wrong straight away, but it took about a minute before she realised exactly what had happened, and what that meant. Ella has trouble being able to speak clearly, and it can be hard to understand what she's saying sometimes.

But in this particular instance, after looking at us and picking up the tube in her hand again, she very clearly and emphatically exclaimed 'Oh, no!'. Despite the obvious seriousness of the situation, between her very dramatic tone and the delayed reaction, it was kind of funny and we had a brief chuckle.

But it was very quickly back to serious mode. Emily asked 'Do you want mummy to try and put it back in?' Ella shook her head, so it was definitely a job for a doctor/WCH emergency room. After having tape on her face for months, the skin on her cheek had been irritated to the point of being very red and sore. Since there wasn't much point keeping it on, Emily peeled the remaining tape off to give her skin a bit of fresh air, before going to Ella's room with Sally to get her dressed and ready to go off to the paediatric emergency department at the Women's and Children's Hospital in the city.

 Ella became a bit upset realising what had to happen, so I gave her my toy car to play with... while Emily made a call to let the hospital know what had happened, and tell them Ella would be there soon to have a new tube inserted.

Ella's previous tube change was quite difficult and traumatic for everyone concerned, as Emily had Scarlett with her as well, so Sally quickly made the decision to go with her to the hospital. In the meantime, Daniel would stay home to look after Scarlett. I was feeling rather crook after a bad few days, but thought it would be good to go for added moral support. Since I was feeling quite sick and wasn't sure how long the wait might be at the emergency room, I decided to drive there in my parent's Commodore which I was using that night, while Sally went with Emily and Ella in their Statesman.

First they had to make a quick stop at West Lakes Mall for some petrol, Emily filling up and paying, while Sally and I tried to keep her entertained while Emily was gone for a few minutes, and take her mind off going to the hospital.

Within a few minutes we were off again, heading up Port Road to the hospital, slowed here and there by red lights and a passing train.

My nausea levels were pretty bad for most of the drive up. Partially due to me not feeling too good in the first place, as well as some stress of going back to hospital for a tube insertion; even though it wasn't me this time.

Driving can, at times, be involving enough to get my mind off my nausea if it's particularly bothersome. But as I have discovered several times now, steering an automatic V6 Commodore, the automotive equivalent of a fridge or dishwasher, is nowhere near entertaining enough to keep my mind off anything. Combined with soft, wallowy suspension, it really doesn't help feeling sick at all. At least with my Cefiro I can enjoy the sound of the engine and exhaust, while concentrating on the heavy clutch and changing gears, while accelerating, braking and cornering without the car tipping back and forth and side to side like an amusement park ride.

But I digress. After the relatively short drive we arrived at the Women and Children's Hospital. Unfamiliar with the parking situation on the emergency room side, I saw a few open spaces to the side, but followed Emily partway down to the entry, before realising there were no more spots left to park.

In the 60 seconds it took to turn around, all three parks I'd seen were filled, so Emily pulled up on the other side of the road, while I went around the corner and parked a short distance away, before walking back to where the girls were.

Once Ella was strapped into her stroller, we headed down the steep footpath towards the hospital entrance.

The path to the ER department was a bit of a maze, but after a few minutes of winding our way through the corridors, we arrived at the triage desk in the Children's Emergency Department.

 There were quite a few other kids around with parents, and some toys to play with for people waiting, so Ella had a bit of a play around with some stuck to the wall, before getting a book for Emily to read to her.

After only waiting for 15 minutes or so, a nurse called us in to walk over to the room where the tube would be replaced. There are some pictures on the walls in quite a few places around the hospital, but the walls inside the room were completely covered with paintings of animals, if I remember correctly.

I thought it looked interesting so I snapped a couple of photos, but then a nurse came in and pointed out the 'No filming' sign which I thought would have meant video. I said ok and stuck the camera back in my bag, but she followed up with 'Did you delete the photos?' To which I responded 'I can...' and wiped the two photos. She said something had happened and somebody had ruined it for everyone else, which I was curious about, but this was hardly the time for a discussion about photography, so after deleting the pictures I stowed the camera back in my bag.

At this point Ella knew what was about to happen, and very understandably started crying when the two nurses came in to start getting ready for the procedure. I showed her the toy car with the flashing lights again, which mildly distracted her for half a minute, but then it was time for the tube insertion. 

I had the same tube insertion procedure done to me in October 2010, although they were nice enough to wait until the day after my birthday to do it. Sally said that was one of the worst things she's ever had to see, so we thought it would be best if she left the room for the tube replacement, while I stayed in there to help Emily. 

They started by getting Ella to lie down on the bed in the middle of the room, with Emily and one of the nurses holding her arms and upper body. With the imminent and very unpleasant tube insertion about to take place, she started struggling and kicking to get away, so I held onto her feet to try and help keep her still, so the tube could go in as smoothly as possible.  

Knowing how horrendously bad inserting a naso-gastric feeding tube down to the stomach feels, I felt terrible helping hold her down, even though it needed to happen, and was for the best in the grand scheme of things. I didn't want to see her face when they were doing it, so I turned away and tried to hold back the tears as I heard her crying, choking and gagging as they got her to swallow the tube. 

Fortunately this went a lot better than the previous tube placement, and it was probably all over in 30 seconds, but given the context it felt much, much longer. I think the only reason I didn't cry myself was that it was over fairly quickly, and after the nurses re-applied the tape to her face, she jumped back up into Emily's arms, while the nurses encouraged and complimented Ella on what a great job she had done with the tube procedure, and offering some colourful stickers to put on her hand. 

With a tearful half-smile and wave, Ella said goodbye to the nurses, and we went back out to meet Sally who was waiting outside. Since she could still hear Ella inside, she was a bit upset as well, but with the nasty medical stuff over with, the mood lifted a fair bit, and Emily helped put a grin back on Ella's face by racing her stroller down the corridor and spinning around as we headed back outside.

Once we got back to the car, Emily strapped Ella back into her car seat. Since the tube was still new Ella gagged on it occasionally, but generally seemed in better spirits. 

 With a quick hug goodbye, Emily headed back home with Ella, while Sally and I walked back to our car and headed towards home too.

 So it ended up being a rather eventful first birthday. Ella will be having surgery for a gastrostomy tube on the 7th of September, so hopefully this was the last time she would have to go through the torturous naso-gastric tube placement.

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