Today I heard that Trevor died yesterday. Due to the severity of his disabilities, it was felt that life on a vent was not a long term option. So he and Barb went to their local children's hospice, where he was extubated and then allowed to fall asleep in his mother's arms. A peaceful death, after a Christmas Party on Sunday in ICU with all his friends around him. But a sudden death; even two weeks ago he was making surprising cognitive leaps and startling those around him. Pray for Barb now as she goes home to an empty house.
And yesterday I heard that one of our ROSY babies died over the weekend after a short illness.
That makes five children in the past two months. And it isn't deepest winter yet. Rest in peace - or dance with Goldie, whatever makes you happy.
Mog is poorly. I took her to the GP to get her blood test this morning. Many thanks to Little Fish's nursery teacher for looking after her over lunch. The nurses were only able to get 0.5mls of blood out of Mog and apparently are not allowed to use the veins in her wrists (which are her best bleeders), nor are they allowed to try more than twice. So they will send 0.5mls of blood off to the lab and hope they can do a proper test with it. If not then we have to try to arrange an appointment up at the hospital with a paediatric phlebotomist.
Mutterings have been made about testing her urine. But no one wants to use a sample from her pads, she can't sit on a toilet, and no one wants to cath her. So we're just not testing it. Mutterings have been made about testing her sputum. But although I'm getting good at catching it, no one seems to want to do anything with it.
Meanwhile we have a hot child who is too floppy to kick her legs to show off her boots. A child who is too lethargic to swallow properly. A child who is quiet and tired during the day, and miserable and apparently in agony during the evenings. Oh, and as of today we can add in diarrhea and a certain amount of retching too.
There's a possibility that this is the new Mog. There's a possibility that this is all drugs related. And there's a possibility that she's ill with something we haven't picked up yet. I just wish that someone could swoop in and tell us what's wrong, and what we need to do to fix it.
We decorated for Christmas this afternoon. Lights and balls and bells and tinsel on the tree, and the ornament Goldie helped to make one Christmas at the hospice. Each year I hang it on the tree trying to find somewhere where I can see it but where small fingers can't smash and grab it. This year I've skipped the chocolate decorations and have gone for candy canes instead. I don't like candy canes, so hopefully they'll stick around for a few days.
Tinsel hanging over our photo frames, and what looks like star-studded barbed wire around the hall. Our Nativity carefully arranged where questing fingers cannot find it. I realised as I put decorations out that certain cards and decorations have been out all year; there's a Christmas card sitting on the bookcase which has been there since last December and a sprig of holly which has somehow survived the past twelve months too.
Little Fish helped by trying to run off with the spare bulbs for the tree lights, trying to water the trunk with her multivitamins, and pulling the balls off the tree to post them into narrow cracks elsewhere in the room. Mog helped by refraining from needing suctioning until I was poised mid-air sellotaping the barbed wire stuff to her door frame. The cats helped by carefully lifting random blobs of food out of their bowls and spreading them festively across the floor. And yet somehow we managed it.
And we managed it in time to be smilingly ready for the photographer and for Mog's other family; another photo shoot and another story told from a different angle in a different magazine. I hope that telling Mog's story, and especially telling Mog's mother's story, helps others who may find themselves in the same situation.
On which note, anyone interested might like to tune into BBC Radio 4 on Friday evening; this week's play is a dramatised version of When the Bough Breaks . It will be available on the Listen Again thingy until Boxing Day.
And now it's getting late, and Mog is miserable again. Not coughing any more but writhing in pain and I don't know which bit of her is sore. I'm thinking stomach; it seems to be coming from somewhere fairly central, but how to know for sure?
I'd really appreciate some answers tomorrow; I just hope that little drop of blood somehow stretches to be sufficient to run the tests.