Kessia's nasal-gastric "food" bag
Kessia's pocket money obsession
Kessia's incredible artistic skills
Kessia, the Connect 4 and Hangman Champion
Kessia is so much like me. When she is hungry, she needs food NOW, and it has to be hot and tasty.
Having the nasal-gastric tube inserted at the Gold Coast Hospital was a really positive step for us. Not only did it allow us to administer Kessia's medications without using needles (they were injected directly into her tube), but more importantly, it allowed us to comfort her food desires.
The nasal-gastric tube is connected to a drip bag, with a very thin, flexible tube inserted through a nostril and down into the stomach. The insertion of it was actually not as distressing for Kessia as it sounds, and the tube can be left in for weeks. The other alternative was a subcutaneous needle-drip arrangement which would allow us to administer medications and keep Kessia hydrated, but not provide liquid nourishment. It would also have required replacing every few days.
The night Kessia's tube was inserted (by our wonderfully gentle male nurse, Thomas) the bag was filled with milk. When Kessia woke the next morning, we explained how the tube and bag worked --- that whatever was in the bag goes into her stomach through the tube in her nose.
She immediately asked (by writing on her etcher sketcher and indicating towards the bag) for chocolate milk. Thomas said it was a hospital first, found a chocolate milk, and ceremoniously emptied it into Kessia's bag. She was content with that for a while.
Then came a long list of all the things she wanted in her bag. When we got to spaghetti bolognase, I had to explain the liquid nature of her food bag again :-). So that night, she asked for chicken soup. I did my best to find some, but in the end, had to give her leek and potato soup, blended with lots of milk. I told her it was chicken soup, and showed her the colour was different to milk. She was adamant about not having milk in her bag!
By the time we arrived home from the Gold Coast Hospital, the tube had been in for two days. We decided to give Kessia anything she wanted that could fit into that narrow tube without blocking it up.
I explained to Kessia that when people chew food, all it does is mush it all up a lot so you can swallow it. I told her that all I would be doing was to pre-mush her food for her, by blending it while she wasn't able to chew and swallow; it would look different afterwards, just like chewing food and spitting it out would look different. I told her that although she wouldn't be able to taste the food, all the food that she asked for would be going into her tummy through the tube, and she'd be having tummy tastings.
For those crucial two days before Kessia died, I feel tht Kessia was "psychologically" satisfied on the food front. It was a bit surprising, since I wasn't sure if it would be more frustrating for her (seeing the food but not being able to eat or taste it). But the bag and it's strange contents proved to be a huge comforter for her.
I loved the way all our "helpers" rallied around to make her requests possible. Uncle Andrew was the main person for this --- doing things like driving to Dixon for dumpling soup, or to McDonald's late at night to buy various desserts in the hope one of them was what Kessia was trying to describe.
The first night at home, we gave Kessia melted rehyrdrating icey-poles. The following morning we gave her ribena which she liked. The hospital dietitian recommended a milk formula, and would have most likely been surprised by our alternatives :-).
To finish the story, here are two of the imaginative concoctions we whizzed up on Kessia's request:
Cola jelly. We didn't have any cola jelly, but mixing raspberry jelly with lime jelly gives a pretty good cola colour :-). I had Michael in the kitchen giving me a few directions such as, a little more green... do you have any food colouring... now if you hold the bag up like this with your hand behind it when you show her, the colour looks darker... He was very sweet.
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| Denise
shows Kessia the bowl of chocolate cake, icecream and topping |
Geoff shows
Kessia the blended version in her bag, while she writes on Michael's laptop |
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1 November 2002 |
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Oh, and just while I'm on the subject of interesting concoctions, while Kessia was still able to swallow thickened fluids (normal liquids basically went into her lungs when she tried to drink) I invented "sunset drinks" for her and Joshua. They were a mixture of really thick ribena, really thick lemon cordial and normal fanta. They made wonderful reddish, yellow and orange layers and the kids loved them.
Kessia's phenomenal memory didn't diminish during her illness. On Sundays, Kessia got $1 pocket money and an extra 50 cents baby-sitting money if she helped look after Joshua. She always got $1.50. Without fail, she would remind us if we had forgotten pocket money day :-).
She had been keping her money in a cute little pink wallet I bought for her in Burma last year. But in the big clean up our friends did while we were at Sydney Children's Hospital, it disappeared. Kessia asked constantly if I had found it yet, because it had a $10 note in it from her birthday earlier this year. When I realised that was one of her main concerns, I gave her $10 of mine to look afer until we found her's, and then bought her a heart-shaped fairy money tin to store her hoard in.
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Kessia spent many hours counting out her money! She kept tabs on it all in tables she made by herself: rows of 20c, 50c, $1 and $2 coins according to the number she had. Each time she counted out her money, she made a new table. I think her last table showed she had something like $47.65. Her money tin grew quite heavy quickly! The two of us joked about not letting Geoff know where the key was so that he wouldn't steal money for cappuccinos :-). She kept the key hidden inside a little turtle box, also from Burma. A week or so before she died, I sent Michael out to the garage to take out some boxes for me to look through, in the hope of finding her beloved pink wallet. Michael excelled as per usual, and found the wallet instead. Kessia was very happy (and of course, I let her keep the other $10 :-)). One of Kessia's last scrawled messages almost made me cry. Actually, all her messages made me want to cry. A few days before she died, when she could barely hold a pen, she started writing the word "poket" and I immediately knew what she wanted. |
| Kessia's
money tin, wallet and turtle where she kept her keys; on a painting of
fireworks by Joshua which he made for Kessia |
With great fanfare, I produced her pocket money and helped her hold the coins (which she was not really able to do) and drop them in her money tin. The coins made a lovely tinkling sound which I suspect, would have made her smile if she had been able to.
Geoff and I thought of putting Kessia's pink wallet and money tin in her casket for her next journey, but we decided they were too much a part of her to part with. Besides, as we told Kessia, anything you want when you're in heaven magically appears before you. Where Kessia is now, she has no need for money.