Ivy – girl
Monday – terribly sick.
Tuesday – hospital.
Positive for Vancomycin Resistant Enterococcus.
A very nasty bug.
Will need a long course of IV antibiotics to get rid of it.
Wednesday – more of the same (pain,antibiotics, fluids, sleep, sleep, sleep, hydrocortisone and lots of tears)
Thursday – a whole lot better.
Stable, so gate leave for the weekend (yay).
Friday – cannula tissues.
Back to hospital for new cannula.
New cannula inserted.
IV antibiotics recommenced at home
and lots of other stuff (both good and bad) in between.
Let next week be better, please.
This morning she is nervous
and her behaviour reflects this.
I am too.
She knows tomorrow is infusion day -
our first without a general anaesthetic.
Our progress has been slow and so we have ended by doing an additional four to our original plan
and it has been good.
The girl has been the happiest I have ever seen her,
without the stress of infusion days
but now we are moving towards our goal of being able to do them at home again
and I am looking forward to that.
What I hope will happen, what I’m wishing for with all of my heart
is that over the last eight weeks, with all of the therapy
and the medical play
and the rest from the anxiety and worry
that we have been able to break that all consuming fight or flight response
and that Ivy will be able to once more use her amazing coping skills (and I mine)
to make that leap into firstly the needles with sedation
and finally without.
We have spent time just holding the butterfly needle and “seeing it for what it is” -
a thin sliver of metal straw and some plastic that will sting for a minute but helps her body to fight
and we have been talking about adrenaline and endorphins;
Her: ” Why, when I breathe, do I feel more relaxed?”
Me: “Because you have endorphins that are released to help you and that stops the adrenaline from making you feel scared”.
Her: “Oh, so the adrenaline is like a mean dog and the endorphins are like a kind person, who pats and strokes him until he feels happy and doesn’t want to bite anymore?”
She is insanely in touch with her own body.
She is also very hard on herself;
“I want it to work. I want to do the needles at home but if in three weeks (four weeks, nine weeks, seven weeks - the numbers change with each conversation)
I can’t relax I want to talk to [the paed] about going back to IVIG”.
As her mother I can’t think of anything worse than having to find IV access every three weeks
or all of the side effects and complications that go along with it
but all I can do is listen and try to advise.
It’s her body, after all and ultimately she will need to learn advocacy for herself
but at 7 1/2, I think I should still be able to guide her.
I tell her everyone understands how this might be scary
and that our awesome play therapist and lovely pain doctor will go as slow as she needs.
Ivy can be determined though and her eyes glaze over whenever I mention it -
I feel like I’m being placated by a tiny pacifist.
Time will tell, I suppose.
For now, we are just going to concentrate on ‘stroking the dog’
and getting through tomorrow.
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.