Posts Tagged ‘nasogastric tube’
Ivy went back to school today
nasogastric tube and all.
Some have said I shouldn’t have let her go
but I did.
She’s only being re-fed overnight now and having bloods taken every other day, so why not?
She said to me at 5 am (because we were both having trouble sleeping and all good conversations seem to happen then)
that she was quite excited but nervous too
because she didn’t want the other children to tease her.
I told her I thought that they would all just be happy to see her back at school.
When we arrived at the gate, I think we both felt a little scared.
She clung to my hand tightly, eyes darting from person to person.
Some kids walked by.
Others did a double take and even others walked purposefully alongside her
and then stretched their necks around to see.
In the end though Noah took her by the hand and they sat in lines together
and then one of her favourite people - “Ella Grace”
sat on the other side of her.
Two brave protectors – the brother and the friend.
Thank goodness for the brothers and the Ellas in this world.
Ivy relaxed then.
It’s only human nature
to want to know what is going on in someone else’s lfe
and children are transparent and they don’t hide their curiosity.
That is part of their beauty.
A nasogastric tube is like a neon sign in a small country town where not much happens
or if things go on, they are certainly not as public.
It says “I’m struggling”.
At least, that’s what it says to me
but I know that most of the kids will have never seen such a thing
and they just want to understand.
I like that people want to know, mostly -
it feels like a linking of arms, a connection
but just like Ivy, I don’t want her to be teased.
Teasing on top of everything else is straw on an already broken back.
I bet she has a good day though.
She seemed really happy when I left
and happiness has been in short supply lately.
Last week she sat on the bench of my kitchen island and cried.
Big, long sobs
with tear tendrils coursing down both cheeks.
I let her go and she cried for over half an hour.
When she’d finished, her tears now just the hiccups of resolving grief, I asked her if she knew why she was upset and she said
“some days I just feel so sad and the tears need to come out”.
That may have been my undoing for the rest of the day.
I suppose it’s a good thing that she can express how she feels
but it’s still hard to hear.
She’s quite tiny at the moment.
Just 18 kg.
The refeeding syndrome has taken a long time to get on top of
and the kilo that she managed to put on last week was lost
after a spectacularly bad night on Friday
where she went into some kind of fluid overload and couldn’t breathe.
Being on high alert at 2am is not a pretty sight in anyone’s books.
Thankfully everything eventually settled
but the trade off was the loss of her weight gain.
Bad times are just incredibly bad and a kilo might not seem like a lot
but in Ivy’s world it is.
It just is.
The thing is she’s at school today and I’m going to take that as a positive.
It’s a three needle day and so home is going to be heavy this afternoon.
A day at school is just what she needs.