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Hopefully healthily home.
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 ;
also true
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 listen
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.
Better now, maybe.
To say that Ivy was sick would be an understatement.
What we thought was a UTI was actually a very bad kidney infection (pyleonephritis)
and so all thoughts of being home on the Monday flew out the window, once the new doctor saw the ultrasound.
The new doctor is lovely but she hasn’t figured Ivy out yet -
she doesn’t know all the quirks and tics
but she’s learning quickly
and that’s a good thing.
In a few more months I’ll have to stop referring to her as the new doctor, I suppose.
The girl is better now
but not
if that makes any sense.
The new doctor said five days of antibiotics should resolve any infection
but we were discharged on a heart rate that makes me feel…
uncomfortable.
Nervous.
To say the least.
The registrar who discharged us early this morning, after her final dose of antibiotics, said he wasn’t concerned
because she had no fever.
Some days I want to write a big sign and plaster it somewhere so everyone knows
that if Ivy gets a fever, it means things are beyond terrible.
Her heart rate is the first give away that her body is working hard.
I tired to convey this without sounding like I was being over protective and strange but
I think I came across as just that.
I am (we are) very, very happy to be home though.
I just hope we get to stay here now
but my mother gut says that this is a false start.
I hate my mother gut sometimes.
I hope she’s wrong.
We need to wait for results to come back before we will know for sure.
For today though, I think I am going to have a hot shower
and a few cups of tea
and relish in the fact that Ivy will make the Book Week Parade tomorrow
and that Noah’s “Thing One”
will have his “Thing Two” linking arms and skipping the parade circle with him.
Home. Again.
We came home late yesterday afternoon.
On top of everything else Ivy had another UTI or the same one as last time, maybe
and another abscess.
This time forming in her belly where her subcutaneous needles have been going.
They did an ultrasound but said there was not much fluid there.
Of course, I’ve heard all of that before with the chest lumps.
First it’s nothing and then it’s something.
The new doctor said she thought it was nothing too
and that we could go home because Ivy’s cannula had tissued
but I said I was worried
and so she looked again and said it was something.
She spoke to the kind surgeon who said it was something too
and so it was decided that instead of going home
the girl would need to go to theatre to have a needle aspiration.
It was going to be such a small procedure that at first they thought they might do it on the ward
but the kind surgeon knew Ivy well and said it would be too hard on her.
I was glad because needle aspirations are not easy
and with needle anxiety they are not fun.
The anaesthetist was lovely and listened when I said that Ivy had surgery phobia
so she dosed the girl up with midazolam
and we more floated into theatres than anything else.
The kind surgeon said it would be quick and the anaesthetic light
and so he let me stay.
Against protocol
but I was so thankful.
It ended up that there was more than just something.
There was a lot of thick gunk
and the kind surgeon wound up having to do a small incision, rather than a needle aspiration to clear the abscess
and I was glad that the new doctor had listened to my worry.
It was disconcerting seeing all of that stuff coming from her belly
even though I’ve seen it many times when I was nursing
so I focused on Ivy’s little face
and listened to the anaesthetist tell me how watching her son have a tooth pulled made her feel faint
while she stroked the curls away from Ivy’s face with one hand
and deftly cupped the nitrous mask and maintained her airway with the other.
I guess it’s universally hard to watch your child go through trauma
no matter your profession.
In recovery the nurse told me that her son had just turned 29
and had immune deficiency too
and even though my throat closed over and I needed to go outside to regain my composure
after the surgery (does that happen to anyone else in stressful situations? Calm and then after it’s all over – not.)
I felt lucky that we had somebody who understood.
It felt like being bathed in sunshine after a storm.
The new doctor’s fellow came up to recovery
and I asked if these abscesses were going to be an issue from now on
and what that would mean for Ivy having the subcutaneous infusions.
He said that sometimes we have to weigh up everything and decide if the risks are worth it.
Ivy’s immune system is such that these things will unfortunately happen
but the immunoglobulin and the gamma benefits are much greater
and so we accept that abscesses might (and do) happen.
I’m not sure how I feel about that just yet.
After recovery we were allowed home to wait for the results
and to snuggle with the other kids
and sit around the kitchen ;
able to debrief with hot tea and way too much chocolate.
Coming home is both hard and lovely all at once.
Things change while you are playing hospital
and there are always reintegration issues
and cleaning to be done
but that isolation is instantly gone -
the minute you’re home you are a family again
and that makes me feel happy.
Ivy is happy too.
