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. Being a fairly serious surgical procedure, it requires a full general anaesthetic.
Here's one of Emily's photos taken just before Ella went in to have the gastrostomy done.
Ella went through the surgery relatively well, but coming out the other side she was very groggy and in pain, which is normal. Unfortunately she wasn't doing great in the evening, suffering from a high fever and vomiting, followed by her IV tube coming out of her arm. Between me visiting two days in a row, needing to rest and Ella not doing great, I thought it would be best to wait until Thursday for a visit.
While she was obviously still in pain Thursday morning, the fever had gone and she was alert enough to watch a bit of Dora the Explorer on her dvd player, in between sleeping.
With her wound site looking quite good and her general health improved, the doctors and nurses said that if Ella was doing ok, then they could go home later that day, after sorting out medications and so on.
After spending most of Wednesday in bed resting, and actually getting close to having the 1400ml of Ensure liquid nutrition I should be having for 20 hours out of every 24, I felt ok to go in to the hospital again to see how Ella was doing.
So I headed up mid afternoon, driving my parents' Commodore. It was certainly a much easier car to maneuver through the multi-story carpark compared to my Cefiro. A heavy clutch, mechanical two-way differential and minimal ground clearance had made going up ramps and parking a bit of a challenge on the previous visit.
So with much more pleasant weather than Tuesday night, I made my way out of the carpark and into the hospital.
As is fairly common, there were several people smoking just outside the front, near the signs that say no smoking. One bright spark even had his two little kids with him, if bothering other people walking out with sick children wasn't enough. You would think he could at least walk across the street so as not to put smoke right into the hospital's ventilation units.
The walk down the hallway seemed much less ominous during the day, with sunlight streaming through, and the brightly coloured building visible opposite, along with the cafe area down below.
The reflections and clouds made for some interesting shots.
It may have helped knowing that Ella would be going home soon, but walking along had a more positive vibe compared to Tuesday night.
The ward entrance is generally locked and you need to be buzzed through, which happened much more quickly this time.
So I made my way over to Ella's room, where Emily was holding her on the bed while a physiotherapist was patting Ella's back to help clear her lungs. Her name was Kate I think, and she seemed really nice, chatting away to us as she worked on Ella.
She was awake and her eyes were open, but being pretty zonked out from the surgery, she didn't really respond to me being there. There was another 10 minutes or so of the physio, where we were talking about Ella's tube and how I also have one, albeit a jejunostomy. Like a nurse on Tuesday, she was a little surprised, so I guess it's not overly common for visitors to have one as well as the patient.
We then carefully moved Ella to lie on her other side while Kate did some more pats on her back, she had her eyes closed and looked quite out of it, but considering how painful my surgery was, I was surprised we could even move her without a lot of protest.
She did have a 'Fairies' DVD playing at the time, and she opened her eyes for a little while to watch as the physiotherapy continued.
After Kate had gone, Ella sat up looking a bit brighter, acknowledging that I was there, and we asked if she wanted some chips. She looked pleased with the idea, so I brought the box over for her to get a packet. She had just been bleeding from her lip quite a bit, due to dehydration I think, so Emily tried to give her Cheetos which would be a bit gentler on the cut, but the old favourite salt and vinegar won out again.
So the blood on her hospital gown looks a bit drastic, but it's not a big deal. At this point I think she asked again where Sally was, and I said that she was seeing another friend. Sally is pretty awesome, so I'm not surprised Ella misses her when she's not with me like usual. It was so good to see her face free of tubes and tapes after months of having the naso-gastric tube.
In addition to her Bullseye and Jessie plush toys, one of Ella's grandma's had given her a 'Lotso' teddy bear, from Toy Story 3. It's the kind that talks when you squeeze him, with 45 different phrases. It's somewhat sanitised for children in a way; in the movie the bear seems nice at the start, but then turns all mean and nasty about halfway through, so I don't really like him.
Still, Ella seemed to really like it, making him talk and giving him a hug.
She actually smiled when playing with him, being in a fair bit of pain and on medications, she understandably hadn't been looking too happy.
There was a bit of a funny moment next. Emily had been sitting on the bed with Ella for maybe 15-20 minutes while we were talking, while she was happily watching her DVD. Then she suddenly piped up with 'Heeeelp. I'm stuck! I'm stuck!'. She has said that sort of thing before, most memorably when she got Scarlett's Lightning McQueen car jammed in the doorway to her room, but given the context it was amusing.
Emily took it to mean that Ella wanted to stand up, so we carefully lifted her onto the ground to see if she could hold her weight, being the first time since the surgery she'd tried. After about 30 seconds she decided being in bed was probably best after all, so Emily put her back down again.
I was surprised she even wanted to stand up, when I had my jejunostomy, the pain from moving anywhere at all was excruciating, even on some pretty decent doses of Panamax three times a day. I needed help just trying to sit up a little. But luckily, as I think I mentioned before, a gastrostomy for a kid is a much simpler and less painful procedure. She was whimpering here and there and saying 'Ow, tummy hurts', but she's quite a trooper and was generally taking it in her stride.
Her hair was a bit all over the place so Emily got a brush to tidy it up and make a ponytail, while The Fairies DVD kept playing.
A nurse came in at some point saying that they were happy with how Ella was doing and she could go home in the next couple of hours, whenever she was ready.
So in preparation for the departure, Emily thought it would be a good time to sneak out and move her car over to the entrance of the children's hospital side, while I stayed with Ella. Partway through the Fairies show she got bored of it, so I picked up the case of DVDs so she could pick something else to watch. After making a few suggestions, she decided on the Lion King which was good (for me); the Fairies and Wiggles aren't targeted at my age group.
So she lay back down munching on her chips, and started to watch the movie.
Although things had been fairly quiet with regards to nurses and doctors for the first hour or so that I was there, in the ten minutes it took for Emily to move the car, at least 5 or 6 nurses, doctors and pharmacy people came in. I know some of what medications Ella has and needs, but having such a barrage of questions from people I wasn't completely sure of the answers to was a bit tricky. Her phone also buzzed every few minutes with text messages from Daniel and Emily's mum, so I really didn't get time to just watch the Lion King. I didn't realise at first that Rowan Atkinson (Mr. Bean) does the voice for Zazu, the bird.
Ella did have a drip up at first after the surgery, but it had been off since that morning if I recall correctly.
There was a special fairy bear on her bedside table, from the Oncology Children's Foundation. http://www.ocf.com.au/
Just reading and writing that term makes me feel sad.
Emily came back shortly after, and I relayed the information from the nurses and doctors as best as I could, although there would be someone coming back to confirm anyway.
Then someone came in with a tray of dinner for Ella, featuring a mix of rice, wedges, macaroni cheese and some cake. It didn't look particularly appealing (better than my 'eggs' in the first post, although that's not saying much) but we put the tray in front of her so she could try to eat something.
She didn't seem to be a big fan of the chocolate cake...
...but I helped her with eating a few small mouthfuls of rice and pasta, although she wasn't particularly keen on eating anything substantial.
Since it was nearly time for Ella to be able to leave, I helped pack up some of the bits and pieces lying around. Daniel had just finished work and was on his way, but it would take a little while for him to drive to the city, park and get up to the room with her wheelchair, so we started getting Ella ready. Removing the nasty blood-stained hospital gown, I think it was the first time Ella had seen the gastrostomy site. She became quite distressed at the sight of it, crying and saying 'Oh no, oh no' several times.
Which is a fair point; even though I've had my tube for nearly a year, I still get a bit weirded out looking and thinking about it sometimes, and it does look pretty wrong.To try and reassure her that it was ok, I showed her my jejunostomy wound site so she could see that we were matching and I was doing alright, which seemed to help a little bit.
Just for a comparison, this is where my tube is, quite low down from where Ella's gastrostomy site is on her stomach.
But since Ella didn't really understand it, she tried grabbing at all the stuff attached to her stomach, although to counter that, there was some netting covering the wound site.
There was quite a lot of tape on her arm to hold her drip line, and it had to come out, but being strong hospital grade tape, they have a very firm hold. So feeling like a nasty person again for restraining her, I held Ella's arms while Emily tried to peel off the tape as painlessly as possible, although I know from experience it does hurt quite a bit. So while I was quite distressed with Ella being upset, it did have to be done.
After getting the big bits of tape off, a nurse came in to remove the rest of the tape, and pull out the drip itself. Which again was quite painful, and Ella was crying and struggling while he did his best to get it over with quickly, while we held her arms and legs still. Despite the fact that it was an unpleasant thing to do, she actually said 'Thank you' to the man as he walked out.
It was out quite quickly, and a few minutes later Daniel turned up with Ella's wheelchair, and started collecting everything into a few bags and boxes, ready to go. After getting Ella's PJs on, Emily watched a bit more of the DVD with her, while Daniel set up her wheelchair.
With the wheelchair ready to roll, Daniel picked Ella up and gently sat her down on the chair, strapping her in carefully for the ride out to the car.
With all their belongings packed up, it was finally time to head off, with all of us carrying a couple of bags each.
It was a nice feeling to actually be leaving the hospital, and with beams of golden sunlight coming through the windows, the mood felt brighter.
After going for a short ride in the lift to the ground floor, we wound our way over to the main exit, where their Statesman was sitting.
Emily slowly picked Ella up and placed her gently in her carseat, while Daniel packed up the wheelchair.
Since we'd all driven seperate cars to the hospital, Daniel and I had to head back over to the other side, and Ella was a bit upset that her dad was leaving again so soon.
But he reassured her that he would see her soon at home, which calmed her down a little bit.
With a kiss goodbye Emily headed off home...
...while Daniel and I walked to the opposite side to get our respective cars to follow suit, with Daniel having to make a pharmacy stop for some pain medications for Ella.
When I arrived back at their house, Emily had put Ella down on one of their lounges with a blanket and pillow to keep her comfortable and warm.
Daniel came in a few minutes later.
Emily got a syringe to give her some of her daily water flushes through the tube.
After giving Ella the water, she got the smaller syringes with a few of her nightly medications. Ella became quite distressed again at seeing her tube wound site again, saying 'oh no' and crying a little bit, while Emily cleaned the skin around it to stop any infections. Mine has gotten infected a couple of times, but fortunately antibiotics cleared it up fairly quickly, and I haven't had any more for a while now.
Just as Emily was finishing up the meds, there was a knock on the door; grandma and grandpa had dropped in to see how Ella was doing.
Because of the pain and medications making her a bit dopey, Ella wasn't particularly responsive, but when asked if she wanted to go sit with grandpa she nodded, so Emily picked her up and took her over to the other lounge.
She seemed a little more content watching 'Curious George', although still saying 'ow' every now and then when she moved. Considering I could hardly move at all after my surgery for a week or so, she was being pretty tough.
At around 7pm everyone (apart from me) was hungry for some food, so Daniel headed out to pick up some pizzas, while I left to go and visit my girlfriend Sally.
After having a pretty rough day it was good to see Ella a bit more settled. But as I would hear later on, unfortunately she took a turn for the worse after I left, vomiting quite a lot and losing some much needed fluids. After getting her and the furniture cleaned up, Daniel and Emily helped her into bed and got her off to sleep, hoping the next day would be a bit brighter.