Putting a positive spin on hospital is hard
but it needs to be done
else you may lose what’s left of your sanity.
So before I go any further -
Ivy’s team have been amazing and our nurses brilliant.
I have never been so happy to report that things have run like a well oiled machine to get us to tonight.
We were forced into a midnight dash to Accident and Emergency on Monday
by uncontrolled, unrelenting fever and an alarming heart rate
and Ivy has been becoming reacquainted with some of our favourite IV antibiotics and hydrocortisone ever since.
She was in such a rapid decline that she dropped her oxygen saturations too
and needed continuous O2 and several hours to stabilise.
Tomorrow she’s going to surgery
so the kind surgeon can tend to the same niggly abscess on her belly that has been a problem since November -
which is what made her sick.
It was set off again by the full dose of immunoglobulin that was infused last Thursday
and then the gamma -
and the girl has been struggling since.
Of course that makes sense -
an influx of antibodies are going to do what they’re supposed to and fight.
The new doctor mentioned that Ivy no longer has issues with inflammatory response ;
and biologically understandable with the addition of gamma interferon.
It does its job well.
In fact, I’d have to say that for the last twelve months, since we started the girl on that medication
she has largely lived in some kind of inflammatory response for much of it.
The trouble with these pockets of infection for Ivy is that it also gets into the tissue
and without cutting all of that away
the bugs just proliferate again and eventually cause more issues
and it’s really difficult to excise all of the bad tissue without going overboard and taking too much of the good.
After weighing everything up, surgery seems our best hope, once again.
It was not a decision made lightly.
Can I just take a minute here to say that abscesses bite.
They really do.
They sneakily encase themselves in a protective biofilm that make it almost impossible for antibiotics to penetrate
but continue to infect the surrounding tissue.
Smart, I’ll give the bugs that.
Smart but conniving in an evolving bacteria kind of way.
Yesterday the girl slept.
She slept all day and all night
with her vitals all over the place
but today woke much brighter -
her temperature normal and her heart rate too.
I love it when things just work properly.
She’s spent the afternoon with the Starlight Captains
and with our awesome play therapist – having her medical play session -
something we have been trying to help with her anxiety.
That’s another post altogether.
There is so much going on with Dave and the other kids
and I feel terrible that I’m not there to help
and administer hugs along with those motherly words of wisdom that teenagers roll their eyes at and pretend to hate but secretly crave.
Perhaps that’s a post for another time too.
Tonight I’m just hoping for a good outcome
thinking good thoughts for the girl
and a plan to get us healthily home.
It’s funny how much things can turn around and change in a week.
Today marked the first day that Ivy has had her infusion pain and anxiety free -
under a general anaesthetic.
As it turned out – it was pretty amazing.
Everyone from the nurses on the ward
to the staff in theatre
to the gentle anaesthetist who looked after Ivy with such care
to the kind surgeon, who assured me that I had made the right decision and that no harm would come to my girl while she was on his watch,
were kind and supportive.
I could not have asked for better
and the infusion itself
was such a non event -
after so many months of fighting
that I was able to just sit
and stroke her little hand.
It was the least stressful needle I have put her through.
Last week I never thought that I would consent to such extreme measures
but after we attempted everything again,
it was clear
that nothing was ever going to be enough
unless we gave the girl a true break.
I need to be able to give Ivy the best chance of overcoming this anxiety.
After the great group doctor edict of 2013
the lovely pain doctor verified that she thought a hastened elevation of treatment would be in Ivy’s best interests
and so we tried lignocaine (local anaesthetic)
and hyalase (a medication that disperses the infusion further under the subcutaneous tissue)
and sodium chloride (which neutralises the ph of all of the above),
along with all of the other things we’d already added in.
The infusion itself was a hundred times better,
with less pain
and less of Ivy gripping the sides of the lounge until her knuckles were white
but the anxiety was worse than ever before.
What was already an hour long panic ’ritual’ that we have been refining over the last six months
was extended by another twenty minutes at least
and that was only at the point of positioning the girl,
preparing the site
and placing the needle.
There was a whole lot of stuff that went on before it
and so the decision was made.
On Tuesday when everything was finalised and we had a time locked in
I suddenly faltered
because what I was about to do was extreme
and it was a complicated regime of medication to get to the point of needling
but the cracker for me was their need to run the full dose of immunoglobulin in quickly.
I may have lost the plot a little (lot)
and told the paed and the lovely pain doctor that I had changed my mind.
With twenty four hours and a whole bunch of them sleepless,
I settled with the fact that I needed to do something
and made peace with it.
Ivy has been on the Lovan now for just over three weeks
and she has been spending time with our awesome play therapist.
Tomorrow we are meeting another new doctor from Psychiatry (another catch my breath moment, when he was suggested as an addition to our ever growing team)
the paed and the lovely pain doctor have just been amazing
and you know,
I think I can see things starting to change for the girl.
She is calmer somehow -
and she is even starting to come out of her shell a little.
She loves the pain doctor.
I’d have to say there is stiff competition for the paed
for pole position in her heart, right about now.
Tonight, even though her heart was racing and she had a bit of a fever
and despite having her infusion
Ivy seemed relaxed and happy.
What a wonderful turn around.
For the both of us.
She watches as I draw up the needles.
She sees me tense.
She has not followed through on our ritual of ‘giving back control’.
Despite having every opportunity.
No places have been nominated, by her,
on her little tummy
and she is already sobbing and hyperventilating
and I know
that tonight is going to be bad.
I ask our nurse if she will do the hand holding.
I’m not sure she knows what she’s getting herself into
but because she is kind and wants to help us
Ivy’s sobs have turned into wails
and I am sweating before we even start.
We, the nurse and I, both try to calm her
but she was beyond relaxing before we even started
and I tell our kind nurse ashamedly;
“when it gets like this you just have to hold her down and do it”.
As I unsheathe the needle the bargaining begins -
“please Mum, please I know where the needles will go now. Please!”
“not yet Mum, please, I just need to relax”.
Her eyes dart wildly around the room,
She is like a wild deer trapped in headlights.
I give her lots of options, lots of opportunities to relax and be in control
but by the time we are at this point
everything is a stalling tactic.
There are no spots chosen
and any chance of control (hers or mine) is long gone.
I apologise to the small girl
and to our nurse
and ask that hands be held because I know that flailing arms are a dangerous weapon
when you have small sharp needles to dispense.
Our nurse does admirably
but Ivy is twisting her body from side to side
and pulling her legs up
and begging for me to not hold her down.
She has begun to tell me that she can’t breathe, that she is choking (a new cry in her repertoire of anxiety)
and my heart breaks with every alarmed scream
and every time she asks for me to stop her eyes bury deep into mine.
My fear is reflected straight back through those eyes.
“Not there” she screams, as I start to clean an area.
“Not there either!”
It all hurts!”
and it continues like that as I pinch up the small amount of subcutaneous tissue needed to place the first needle.
Two more nurses come -
their faces full of care and concern shadow the doorway
hoping to help in some way.
I am hunched over her, my elbow pinning one tiny hip to the bed
my chest holding her legs
and for all the world this feels wrong,
How can this be what she needs?
How can I say that this is all for her own good?
the needles find their place
and she rips away from the both of us -
head into pillow,
crying and shaking.
It’s getting harder for her to forgive me these days.
I apologise over and over
both to my girl
and to our nurse
who asks me how we keep going
and if we are getting help for this
and rubs my back
and that is the absolute end of me.
Big fat tears of resignation and failure slide down my face
and rack my body
and I launch into a diatribe of words that make little sense to anyone
especially to me.
It takes a full fifteen minutes of mutual sobbing before the girl slips into my lap
and we begin the dance of forgiveness and comforting.
I rock her
and stroke her hair
and tell her it will be okay
but my thoughts are already moving towards the next night
when we have to do it all again.
If somebody had have sat me down seven years ago
and said to me that
on this day,
after very little sleep,
I would be sitting on my bed with my husband
laughing hysterically (and possibly inappropriately)
because we had both just conceded that six weeks was actually quite a long time to be out of the hospital -
I don’t know that I would believe them
but having lived through today (and the previous night)
I can honestly tell you that I did just that
and in my world six weeks is a long stretch of time between hospital visits.
Six weeks is our limit though;
it’s the girl’s limit
and so we find ourselves in here again.
If you’re thinking kidneys – you’d be right
and if you’re thinking that I’m tired and shouldn’t be blogging at this obscene hour,
you’d probably be right about that too.
I’m finding it hard to switch off though
and I’ve been thinking about how we constantly change our view of ‘normal’.
In previous years when Ivy’s heart rate hit 160 beats per minute, I would feel uptight and frightened
because at the age of six the average heart rate is between 80 – 100 beats per minute
and 160 seemed extreme but now -
now 160 is nothing (160 is a walk in the park)
200 beats per minute is my new point of panic.
In previous years a good ‘break’ from hospital would have been generally accepted as months
where as now if we make it to the next paediatrician’s appointment
it feels like winning…
and so it goes.
I suppose the feelings of resignation that I feel
when I know that Ivy is sick to the point that I cannot help her anymore
and our only way out of the illness quagmire
is through the hospital doors,
is my new kind of normal too.
That numb feeling -
started about six months ago
and they were foreign then
I accept them as a way to protect myself from all of the other associated feelings;
Don’t get me wrong -
it’s easy to be philosophical now
when Ivy is here
and I know that she will be okay.
Not so easy at 3am when you feel pulled in every direction -
kids who need to get ready for their first full week of school
a husband’s pressure to be at work,
weighing up how you can manage to make it through the day
after sitting up all night nursing all of those worries,
along with an ice cream container because the small girl’s nausea leaves her panicked and retching every 30 minutes or so
but I guess that’s just part of our new normal too.