Finally, I had a good night's sleep after several days of troubled tossing and turning. Pushing the send button... a text to Monash Children's Hospital, was a huge weight off my mind. Now it was someone else's problem and I could relax.
This morning Elise sat at the table, head down, strawberry in hand... "I'm just too full, I can't eat it mum." Mum... "well, maybe later you can try again."
Elise managed just two strawberries for breakfast, half a glass of fruit juice and a few water crackers till lunch. It was better than nothing. The rest of the day followed a similar pattern.
Eating, it just isn't that hard... but it is when you're always full, feel nauseous when you eat anything and if you push it, it may be returned to you.
So Elise has been in hospital for 5 days now, drinking lots of meal replacement drinks and answering loads of doctors questions. The problem is, with any serious illness, when you get one, usually more follow. One stressed system overloads another.
Reading the blogs, it makes Elise's experience sound just wonderful (and some of it has been)... but there is another story. A story of struggling every day to get up, to do the basics like eating, dressing, schoolwork. Then there is the other story of social rejection, stunted growth, brain fog that just rolls over her fatigued mind like a smothering blanket and hospital trips after hospital trips. Sometimes I just hope that life will stabilise... all our lives, so we can move on... more than survival mode. Maybe... we pray.
After 2 days of super sweet liquid meals, Elise started really perking up. I noticed it straight away when I arrived at the hospital day 2... the note.
From a medical point of view, Elise's gut (stomach and probably small intestine) aren't functioning properly. Lupus damage, probably. Spinal damage, maybe. The food just isn't moving down and just sits around for a while, meaning that she feels full and can't eat. Sometimes labelled Gastroparesis (paralysis of the stomach), but it is too early to say whether she will own that label. Eating for Elise has been an ongoing problem since she was diagnosed 3 years ago, probably meaning the Lupus has a lot to blame for this.
She has lost quite a bit of weight and at the moment can't eat anything that requires chewing. Fruit, vegetables... nearly everything. So she's having very wet soup, puree fruit, saltanus, nibbling on crackers and the liquid meal replacements. For some reason, liquids are ok. This is typical of this condition, no idea why.
Yesterday she started a new medicine Motilium, which reduces the fullness feeling, nausea and apparently helps stimulate the muscles to move things along. It may not work, it is the first thing to try. On Monday is scheduled a Gastroscopy to check is everything looks ok. Hopefully by then she will be feeling a bit better.
So that is where we are at, Stuart is taking her on overnight leave from hospital on Saturday down the coast for a much needed change of scene. Then back into hospital to see how things pan out. On a cheerier note, they are keeping her busy in hospital... hospital school each day, art classes and on Tuesday I think she got to paint one of the Hawthorn football club member's fingernail's pink. For everyone else, this was a "wow" moment but as Elise isn't really into football, she wasn't that thrilled!
Stu put together a little video of the snow trip:
https://photos.app.goo.gl/cUtS46ncp7bh8uoZ8
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