EXCERPT FROM MASS EMAIL TO FRIENDS
An email to bring everyone up to date, after a very emotional month or so.
“long time off air. . .
Still in hospital with Rose, who continues to struggle to gain enough weight to make a transplant a safe enough procedure. We've been in since 2 December, and it's pretty tricky juggling everything, as you'd imagine, but I think we're staying focused most of the time. The adjustment process continues to work away at us.
Lots of medical spanners remain in the works for our Rose, the worst of them still chronic pancreatitis. Aaarrgh! They still have no idea what's causing it, and haven't succeeded in stopping it either. Pancreatitis isn't even something that happens in kids with Rose's liver condition, so she has us all scratching our heads, and Shane trawling the internet for clues, night and day.
Oddly, despite all the trouble with her kooky pancreas, Rose's liver is kind of holding its own (as much as a liver can, in a baby with end-stage liver failure!?) That might not sound a sensible statement, but her liver is doing some of the work it's supposed to be doing. Though not enough for her to speed ahead with growth. The waiting IS terrible sometimes.
We've had some very scary discussions with her beautiful doctors this last month or two: about Rose's odds of getting to transplant stage at all, facing transplant surgery itself, about all the obstacles in the way of her being a healthy kid, about mortality. One of these scary discussions took place two days before Christmas, and in the presence of Lewis and Hannah. Boy, were there were some emotional pieces to pick up after that meeting!
Christmas Eve and Christmas Day in themselves were really enjoyable because we had Rose home on leave, but, it's fair to say, bittersweet. I think the whole extended family were putting on a kind of collective brave face, trying our best to envision future Christmases with Rose, to imagine Rose growing, thriving.
Anyhow, after Christmas back to hospital and a bit of a growth spurt for Rose. Yay! Then a week or so of "the trots", dehydration, weight loss. Boo! More wild fluctuations since then. A surgically-placed intravenous line went into her jugular vein about a week ago, to give the doctors easier access to her bloodstream for some of the stuff they want to try. Man oh man it's a cliché, but we really are on a roller coaster!
So many positives though: Rose seems to love life, even if she's tethered to an intravenous line for weeks on end, pricked and prodded and repeatedly awoken and conferred around! She's remarkably sparky and playful and curious for someone so frail and immobilized, and she's very loving.
Shane and the kids and I are all seeing the child psychiatry team at the hospital, to stop us going around the bend as a family. That's pretty new, but we reckon it's going to be a great thing.
My poor old bosoms are still bravely trying to pump out at least a bit of milk, to boost Rose's antibodies.
Tougher every day are the bonds between Rose and her big siblings. Rose brightens whenever Lewis or Hannah enter her room. When they deliberately get too close to her, Rose loves trying to pull their hair out of their scalps, or slapping their willing faces. Lewis and Hannah, despite their own ups and downs, are so tender and accepting of Rose, and desperate to bring her home. To bring all of us home in a single household again! We're proud proud proud of the three tough little kids.
Life is exhausting, exciting, difficult, and precious.
We know you're all still barracking from every corner! GO ROSE!”
An email to bring everyone up to date, after a very emotional month or so.
“long time off air. . .
Still in hospital with Rose, who continues to struggle to gain enough weight to make a transplant a safe enough procedure. We've been in since 2 December, and it's pretty tricky juggling everything, as you'd imagine, but I think we're staying focused most of the time. The adjustment process continues to work away at us.
Lots of medical spanners remain in the works for our Rose, the worst of them still chronic pancreatitis. Aaarrgh! They still have no idea what's causing it, and haven't succeeded in stopping it either. Pancreatitis isn't even something that happens in kids with Rose's liver condition, so she has us all scratching our heads, and Shane trawling the internet for clues, night and day.
Oddly, despite all the trouble with her kooky pancreas, Rose's liver is kind of holding its own (as much as a liver can, in a baby with end-stage liver failure!?) That might not sound a sensible statement, but her liver is doing some of the work it's supposed to be doing. Though not enough for her to speed ahead with growth. The waiting IS terrible sometimes.
We've had some very scary discussions with her beautiful doctors this last month or two: about Rose's odds of getting to transplant stage at all, facing transplant surgery itself, about all the obstacles in the way of her being a healthy kid, about mortality. One of these scary discussions took place two days before Christmas, and in the presence of Lewis and Hannah. Boy, were there were some emotional pieces to pick up after that meeting!
Christmas Eve and Christmas Day in themselves were really enjoyable because we had Rose home on leave, but, it's fair to say, bittersweet. I think the whole extended family were putting on a kind of collective brave face, trying our best to envision future Christmases with Rose, to imagine Rose growing, thriving.
Anyhow, after Christmas back to hospital and a bit of a growth spurt for Rose. Yay! Then a week or so of "the trots", dehydration, weight loss. Boo! More wild fluctuations since then. A surgically-placed intravenous line went into her jugular vein about a week ago, to give the doctors easier access to her bloodstream for some of the stuff they want to try. Man oh man it's a cliché, but we really are on a roller coaster!
So many positives though: Rose seems to love life, even if she's tethered to an intravenous line for weeks on end, pricked and prodded and repeatedly awoken and conferred around! She's remarkably sparky and playful and curious for someone so frail and immobilized, and she's very loving.
Shane and the kids and I are all seeing the child psychiatry team at the hospital, to stop us going around the bend as a family. That's pretty new, but we reckon it's going to be a great thing.
My poor old bosoms are still bravely trying to pump out at least a bit of milk, to boost Rose's antibodies.
Tougher every day are the bonds between Rose and her big siblings. Rose brightens whenever Lewis or Hannah enter her room. When they deliberately get too close to her, Rose loves trying to pull their hair out of their scalps, or slapping their willing faces. Lewis and Hannah, despite their own ups and downs, are so tender and accepting of Rose, and desperate to bring her home. To bring all of us home in a single household again! We're proud proud proud of the three tough little kids.
Life is exhausting, exciting, difficult, and precious.
We know you're all still barracking from every corner! GO ROSE!”
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