Posts Tagged ‘Winter’
She brushes my hair
and paints my nails
and says “this will make you feel better, Mum”.
She is, at least, up today
albeit with the grumpies
and I do feel better here.
We both do.
We’ve left the hospital and our nights have been long and full of anxiety.
Hers because her heart hurts from having it beat at a too fast rhythm for too long,
because she can’t stop coughing
because her throat hurts and her ears hurt.
She just hurts.
because I want to fix this and I can’t.
With the others, i can dose them up with medicine, tuck them in, feed them up with soup and TLC and they get better.
I just can’t get it right with the girl.
Her cannula tissued forty eight hours in and my other kids needed me.
The doctor wasn’t about to try to find another vein either.
Veins are hard to come by with Ivy.
So here we are - she’s still not well
but I’m hoping we can do this.
I’m hoping she can.
Here’s to a better week.
Winter is just a few days away and the leaves are falling from the trees at an alarming rate now.
The unseasonably warm days are all gone but as our world hibernates,
one lone rose bud peeps out,
reminding me that at the end of this season will be Spring, when all things start anew.
Nature’s fresh start.
The girl has been fragile.
Her port site has been tender and the pump has been beeping intermittently at us.
Warning us, maybe.
The antibiotics that she has pumped into her have minimal side effects
but I’m wondering if she is anaemic again
and if it’s the medicine that’s causing it.
She has been tired and pale and grumpy,
It could be that she is just sick of the whole carrying around an extra two kilos worth of pump and fluids, the constant needling of her port and general poking and proding
but something tells me it’s not that.
Yesterday, we went to see the paed.
It was before Ivy’s re accessing of her port.
He looked in her ears and declared them clear.
He asked if she’d been well
and then he told me
that they had their first confirmed case of flu in the paediatric wards
and that it was a bad one
and that I should keep Ivy away from everyone and away from the hospital.
“Winter is coming”, he stated ominously.
There is nothing more terrifying to a mother of an immune deficient child, hearing that Winter is going to be bad.
Now, I understand all about isolating your child from the world – been there, done that.
I also know it doesn’t work unless I can isolate everyone else in the family too.
Kids go to school, husbands to work, people get sick
and there are no promises that Ivy will stay well.
Never any guarantees.
I guess it is unfortunate that she was born into a family of such large proportion.
The other thing is;
how can I deny her a life?
How can I not allow her to be part of society?
She needs to get out and make friends, she needs to interact.
She needs activities and play dates and time to just be a child.
I can’t lock her away from ballet
I can’t put her preschool days on hold.
Also: the whole stay away from the hospital thing?
when you have to go there for appointments and medication two or more times a week.
Life keeps moving
but it’s coming
Winter, my most hated of the seasons
So, the antibiotics were to continue in a one week off, two weeks on cycle
and although, I feel as though that is ultimately not going to be worthwhile for Ivy’s health (or lack there of),
I agree that it has been lovely not to have been in the hospital for all of April and now half of May and that it’s definitely the antibiotics preventing that.
The spanner in the works
is that Ivy’s port site is becoming traumatised again
and the nurses and the infectious diseases doctor believe that it needs a good break
and if we keep pushing it
it will end up no good to us at all.
Let me tell you, if you want to put a mother of an immune deficient child in a quandary then offer up this scenario.
The paed says she needs the antibiotics.
The Out and About team feel she needs a substantial break from them, in order to give her body time to rest and heal the access point.
The access was fine, yesterday
however, it was very hard to flush and it was only after fluid was pushed through the port at a high rate, was it deemed okay.
Today I have flushed the darn thing twice because the pump has been bleeping and pinging its cry that all is not right with its world.
I’m loathe to pull out the needle and try to re access her, unless I absolutely have to
but something tells me, I will have to before the week is through
and something tells me that the nurses are right
the port will need to be rested
but Winter is coming,
with all of its nasty bugs and unrelenting sickness,
and I’m not ready.
Ivy and Noah are sick.
Both have colds.
Noah has asthma.
Ivy has goop coming out of every orifice.
Both have had high temps on and off.
The Zithromax is not a wonder drug and yet the paed has faxed us more scripts, so we will keep plugging away.
Two kids on Prednisone is not fun.
Not fun at all.
Turning off the electricity for scheduled stoppage, for a whole day and not telling anybody is NOT cool.
Especially not cool when one of the people you didn’t tell has two sick kids who need nebulised Ventolin (which runs on electricity).
Shame on you Energy Australia.
The best thing about having no electricity and sick kids is that they sleep for a long time and you can finish a whole book in one day.
It’s not as though I could do the washing.