Posts Tagged ‘chronic illness’
Just the facts… and maybe some feelings about those facts too.
The growth hormone levels came back normal for Ivy.
It’s a good thing,
yes.
It’s good but it’s also frustrating and confusing.
It means that her body is making good levels of hgh but it doesn’t know what to do with it
and that’s not great.
It means that we can still apply for the medication
if we want to;
(wait six months for an appointment, fill out a forest worth of paper work, fight with bureaucracy)
it just means more (flaming) hoops to jump through.
The endocrinologist is all for our applying to the government,
and thinks that the synthetic hormone might be the way to go.
The paed wants us to wait.
He wants us to keep exploring the immune system wipeout idea with the immunologist.
The immunologist, who only three months ago, told David and I that she was happy with the way things were,
bar the lack of growth for the girl.
The paed believes that by going down that pathway, we will achieve a decrease in other medications
and Ivy may very well start growing on her own.
I am starting to get that backed into a corner feeling.
This is what I think;
The thought of killing Ivy’s B cells makes me want to throw up.
Every fibre in my being screams to me that this is not the right thing for her,
right now.
I don’t really want to treat the side effects of another medication though either
but to me
it seems the lesser of the two evils.
In my ideal world
I could start Ivy on the growth hormone over the Summer.
It would give her six weeks to get used to the idea and it would also give her an advantage for when she starts school.
She may have grown a bit,
her risk of heart issues decreased,
her chances of bone fractures may have reduced a bit,
her health may have benefited too
and all of those possibilities combined could give her some kind of protection from the new experiences school brings with it
and if it works
who knows,
perhaps, with the change, the paed and the immunologist would stop talking about ‘the wipeout’
and I would be able to sleep again at night.
Of course, it’s not a perfect world.
Is it?
Arginine does not start with R !
Tonight from midnight, she’ll be nil by mouth again.
Tomorrow morning, we’ll travel back into the hospital.
We’ll put the numbing cream into the crooks of her arms, just over the best veins
and I’ll hold her tight as they cannulate her.
It was a decision I didn’t want to make but one I am okay with (if it’s ever okay to agree to let somebody do that to your child).
It was that or the port and while the endocrinologist was happy with that option, the nurses and the paed all warned me against it
for fear that the medication will block the brand new port,
gammy it up in some way
and for all things holy,
that is the last thing Ivy needs.
The test itself should take around two hours
and I am not sure what I am hoping for.
I guess, in a perfect world, it would be good to know that she is producing enough growth hormone
but this is not a perfect world.
It’s one filled with prednisone
and adrenal insufficiency
and a body that does not know what to do with all that it has been given.
It seems wrong though to wish for low levels of growth hormone,
it seems out of place to want the medication, which is a daily injection
but
to think that it may help,
to have that hope
makes the desire very enticing indeed.
Whatever the outcome,
whatever the results,
my wish for tomorrow is that she remains safe.
We had the no breakfast conversation this morning
and the cannula one too.
Both were upsetting but she held it together,
with the promise of treats
and lunch afterwards
and praise for her bravery,
until tonight when her brother was trying to sound out Arginine.
“er, er, Re-arginine” he said, as he traced over the letters,
that I had written on the chalkboard, at her request.
“Arginine starts with R” he proclaimed proudly to all of us present, “It starts with R!”
“Arginine does not start with R, Noah” she tersely scolded, her lower lip crumpling into a quiver
“It’s starts with a needle”.
Indeed it does,
my sweet,
too wise daughter,
Indeed it does.
Wipeout.
It was a short visit this time.
Just three days in the hospital.
We’re home now and recovering.
Slowly,
the girl – still not herself.
The trial off the antibiotics well and truly failed,
Ivy found herself with staph in her ears
and staph in her blood.
Clearly this is not getting any better
or any easier
and I am at that awful fork in the road part of this journey.
The immunologist
and the paed
have decided that it is time to shake things up again.
Plan, B or C or maybe plan Z,
I’ve lost count with the number of plans Ivy has had thrust upon her.
Forgive me,
all I know is that not many have worked.
The plan is
to wipe out her immune system altogether.
It’s nothing, says the infectious diseases doctor.
Just a monthly infusion to kill off her own cells
and then replace them with the IVIG.
Simple, right?
No.
Not simple
and very scary – for me anyway,
the person who has to make the decision to kill off my daughter’s own immune system.
Firstly, Ivy will need to be taken off the IVIG,
wait until that has left her system,
have an extended stay in hospital,
while they
test all of her imunoglobulin levels again,
do a rapid wean from the prednisone to make her blister up,
biopsy the blisters (again)
and wait.
I’m not sure
but I think she will be made to wait
without the Intragam,
out in the community,
during her first year of big school,
while they work out if wiping out her own system is feasible,
make application (yes, another one)
and work out a treatment plan.
With or without IV antibiotic coverage,
I’m not sure it matters,
my current feelings are that it would be disastrous.
If she qualifies for the treatment
then she will start the infusions.
First infusion has a 10% death rate.
Complications include heart failure, respiratory distress, increased risk of infection
and let me tell you,
Ivy does complications,
she does them with a flare for the dramatic.
I think I’m entitled to be a little weary.
It’s not a cure, either.
It is just another patch.
The theory is that by knocking out her own immune system, it will stop her b cells from attacking her body.
This will hopefully (no guarantees) switch off the pemphigus
and then (in a perfect world)
she will wean off the prednisone to maintenance dose
because the doctors are ‘sure’ that it’s the prednisone causing her ear infections to return
but it’s not a cure.
Eventually the b cell production will ramp up again and the autoimmune disease will return
and so will the blisters.
I feel like hitting my head against a brick wall.
Ivy had infection issues long before the Prednisone or the Mycophenolate,
long before the pemphigus
or the diagnosis of immune deficiency
and the immunologist has said before
that if it were the prednisone,
there would be secondary infections on top of primary infections,
which is not the case
and
oh.my.goodness.i’m.so.confused.somedays.
When I mentioned that I was not prepared to jump into something like that until I was sure it was the right thing for Ivy
I was told that most parents,
when they were told that their child needed more tests or therapies,
would just say ‘oh, okay’ (yes, doctor, whatever you say, doctor).
Funny, I don’t remember traveling back in time when people just followed orders and doctors were considered gods.
The time has come though, where a decision needs to be made.
I can either let Ivy live like she has been – with the antibiotics and the IVIG and the occasional infections, that floor her little body
or I can risk everything,
I can risk Ivy.
I’m no closer to choosing which way to go
most days I just feel sick to my stomach.
Well, that didn’t take long.
Everything started out fine.
We passed the 48 hour mark and it was good.
On Saturday the girl woke up with goopy ears.
She wasn’t unwell but she wasn’t herself either.
She asked me if I would put her back on the medication.
We decided we would re access her but before that she asked if we would consider taking her to the beach.
So we did just that.
We made it about an hour before a massive storm swept in over the ocean
but we had fun.
More importantly, she had fun.
When we arrived home we started everything back up.
For the rest of the weekend, she motored along at that kind of half health that she is famous for
and then there was today;
How can everything go so wrong
so fast
I wonder?
Don’t answer that
and how can Ivy’s inability to live without antibiotics
make me feel like the worst mother in the world.
Like it’s my failure.
Now, I’ve spoken to the doctors,
who tell me they expected the trial to fail and Ivy has just proven them all right,
who also tell me that they want me to wait it out until morning;
that she should be improving by then.
If she becomes worse or is no better by tomorrow then it’ll probably mean hospital.
I think it is going to be a very long night, just between you and me.
A very long night indeed.