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The “Ivy factor”.


 

Writing a post has seemed impossible until today.

Things have  been difficult to say the very least and when I wrote last week it was just the tip of the renal failure iceberg that we had begun to deal with.

Ivy spiralled into a period where everything that could go wrong did and was so very sick that all she could do was sleep and vomit.

Her urine output dropped to almost nothing.

Scary things like dystonic seizures happened and MRIs of the brain ( thankfully normal)

and huge shifts in her electrolytes which caused her blood pressure to rise and her heart rate to fall into her boots.

In the mean time her peripheral IV access was becoming impossible and cruel almost.

One, sometimes two new cannulas needed in a 24 hour period and numerous attempts in between left Ivy black and blue.

Taking blood twice a day was no better and even the very best phlebotomists had to have more than one attempt.

It was traumatic and sad and just plain awful for the girl, who just wanted to be left alone in her misery to sleep.

She became drowsy and hard to wake

and we knew that something needed to change because Ivy’s body was unable to keep up any more.

She was flagging.

Her lovely new doctor (who isn’t new anymore and I really should think of a different alias) and the paed started talking about refeeding the girl,

who was beginning to lose muscle and important enzymes as her body literally ate itself to sustain the energy she needed to fight.

Tubes were placed and vomited up and placed and vomited up

and finally it was decided that Ivy would go to theatre to have a subclavian line inserted, a scope and an nj tube placed deep in her bowel, to bypass her stomach

so that refeeding could start.

It was, perhaps, the very low point of this admission so far.

I may have totally lost the plot with a previously unmet gastro doctor and cried the day through.

It might have been a 24 hour pity party.

Our nurses are always so amazing and they were even more so as I snotted and sobbed my way through the thought of putting Ivy through everything

but that everything went well in surgery and the anaesthetist came to me with good news -

that the line, although not in as far as he would have liked, was at least in.

He said, quite seriously;

“there is always that little bit of the ‘Ivy Factor’ that you need to take into consideration”.

Indeed.

The Ivy Factor led that same subclavian line to firstly become blocked and then uncoil itself from the vein less than 24 hours later

and led her potassium to sink to almost ICU worthy levels

and led her heart to start playing up too.

When I write it down it seems seamless and simple but it’s not been at all.

The good news is this:

Ivy’s kidneys are beginning to work properly again.

Her blood pressure is starting to be controlled with the addition of medication.

A new central line  was placed by the kind surgeon on Saturday and

even though it too became blocked about four hours after our return to the ward,

our first bit of good luck was that after much pushing and pulling, sighing and cursing, the damn thing promptly gave in and started to work again.

Ivy is having more and more awake time and happy days where she can play with her brothers and sisters.

Refeeding has started and even though it is slow going there, we are making progress.

It is a slow but steady process.

Ivy’s team have been wonderful

and concerned

and thorough

and forgiving of my outbursts

and I  really could not ask for better for the  small girl – Ivy factor and all.

 

Dedicated to our gorgeous nurses that read here –  who understand the Ivy factor very well.


 

 

The problems with renal failure.

In case you don’t know -

because I didn’t, acute renal failure is no walk in the park.

Just when you think that things are going to get better

they get worse.

The doctors say things like ‘she will turn the corner tomorrow’ and you wait and hope as you watch your child writhe in pain

and vomit until there is nothing left

but nothing changes.

Her lethargy leaves you with barely enough to do (rinse out sick bowls, apply cold face washers) except watch the clock as she tries her  best to compensate

for whatever damage is going on inside that little body.

You start to wonder if  she will ever be okay  again.

Some blood results come back looking better but then in the next breath you are told that others look worse

and that worse thing is poisoning her from the inside out.

It’s causing her to cry out and tell you that she ‘really can’t do this any more’.

It breaks your heart and makes it hard to stay strong.

In case you don’t know -

because I didn’t, kidney damage makes blood pressure go through the roof

and high levels of urea cause the heart to go too slow.

Once the infection has cleared it seems strange to see those numbers

but there they are, flicking up on the little monitor, bright as the day.

I don’t like numbers.

I don’t like monitors either.

Nor do I like that my (almost) eighteen year old daughters are playing mother while we are stuck in the hospital unmoving in more ways than one.

They’re stressed.

I’m stressed.

Their father is at work, bringing in an income.

He drives away at five in the morning and then it’s up to them to run the household.

I don’t like his work or their expectations, although I understand them.

I still don’t have to like anything about them -

especially the fact that he can’t be with the kids when I can’t be either.

So much for the promise I made to myself that I would never have latch-key children.

I have to rely on my kids to look after my other kids.

It’s hard to expect that of them.

It’s hard for me to see that happen.

Suddenly they have had to grow up all at once and that seems wrong to me.

They are doing admirably but I wonder how all of this will mess them around when their real adulthood arrives.

They are angry and frustrated and hurting too.

They are children, after all.

It’s close to midnight now on day six of this hospitalisation and I look at Ivy and wish for a different life for her.

I do that often theses days.

Tonight she has just had her fifth cannula placed in as many days, with countless attempts before success.

I am angry and beaten and sad and defeated all at once.

Her arms are black and blue and she is as pale as the white hospital sheets.

I’ve just checked that she is breathing for the umpteenth time.

This admission seems as though we are adrift on an angry ocean with no land in sight,

in a boat that is rapidly sinking -

which is no good, when you think you may have forgotten how to swim.

 

 

 

 

Hospital is not the place to recover from hospital.

What I know about Wednesday is that the girl had been telling me for a few days that she felt unwell.

Tired and generally feeling yuck.

I put it down to her being on Ciproxin, which is a notoriously horrible antibiotic

and upsets the gut really easily.

I knew that the night before she had vomited twice and her temperature was a bit up, along with her heart rate

but the doctors knew that too.

We checked in with them and were promptly admitted

and by Wednesday night Ivy had crashed and burned.

It turns out she has some kind of  acute renal failure,

her kidneys are pretty sick

and her creatinine climbing way out of the normal limits.

Tomorrow will be day four and she has made no gains yet -

there have been no improvements in her health,

only declines.

It’s all scary stuff when they start talking about trips to Sydney and dialysis.

In fact, I have to say that I’ve not coped very well at all this admission -

teary and frightened of shadowy, unreasonable fears.

Things that lurk in the back ground,

in my worst nightmares.

Her electrolytes are all out of balance,

and she has been very jittery (some kind of tetany they tell me)

but all I can think was that she is going to seize again.

I can’t sleep because I need to be sure it isn’t going to be like the last crash and burn,

which I am almost positive I’ve not recovered from.

There is a lot of new stuff that I have had to learn about very quickly, things that I haven’t dealt with before in the world of Ivy’s health

and to tell you the truth, it’s all very overwhelming.

I feel as though I am jumping too soon, calling the nurses unnecessarily and driving the doctors mad with my questions and “what ifs”.

I am not usually that person.

I am more a “listen and then research it until I have an understanding of what the girl is dealing with this time”

kind of person -

A sensible mother.

This new panicky me is foreign.

I keep telling myself it’s okay -

that having another big thing to deal with on top of the last admission to ICU is so much for a mother heart to take

but my hyper vigilance is unresolved as yet and it is undeniably exhausting.

Hospital is not a place to recover from hospital.

 

 

 

Meeting Jillian Skinner and the amazing evolution of Ivy’s psyche.

A few months ago Ivy, Noah, Maddy and I had the pleasure of meeting our health minister for NSW.

Now, this is in no way a political post

but it was an honour to go

because we were there representing the patient population at the official opening of the paediatric pain service at our hospital.

The first in NSW and Australia.

I was able to talk about the amazing work that had been done to help Ivy overcome her pain and fear associated with trauma

and the extensive therapy, organisation of  Ivy’s medical team and care that has been allowed us, as Ivy’s family.

Jillian is very passionate about everyone having adequate pain relief and has a great understanding of how being in pain can alter the course of recovery.

She believes in the Pain Team, which is very good news for kids like our girl.

I’ve thought about this post for a  long time.

I knew that I could physically show you the difference that this remarkable team has made to Ivy and how far the small girl has come

but I have wavered back and forth on the appropriateness of it.

Sometimes seeing is so much more powerful than reading or even listening.

When we first met the pain doctor we were at a point where Ives would be so distressed and her fight or flight response so acute that she would fight

and beg

and shake

every time a needle came near her.

We worked out and pin pointed the exact moment when everything just became too much for the girl

and then with the help of our awesome play therapist

and the team

we started the long process of  what we came to think of  as “reset”

and slowly, slowly, things began to change for all of us but especially for Ivy.

The first recording that I am putting here is sad and overwhelming for me, as Ivy’s Mum

but it gives you an inkling of what we all had to go through twice a week for subcutaneous immunoglobulin, every second day for gamma needles and every night for growth.

It’s a bit over nine minutes long, which is long, I admit

but what you should know is that this particular infusion day started an hour before I was even able to get the butterfly needle near her

and continued to be just like this for another hour.

Please don’t watch it if you are going to make comments about my being cruel or awful for putting it on the internet.

Please don’t watch it if it is going to trigger phobias about needles or medical treatment in any way.

I’m putting it here so you can see the difference in the next video. If there is any negativity surrounding it, I will take it down.

 

Within the year that we have been working with the Pain Service we have gone from having general anaesthesia for infusion

to  heavy sedation

to  light sedation

and finally to using nothing except some lignocaine (numbing medication)

and Ivy’s own ability to relax herself and let her body do what it has always been capable of doing.

I may be totally biased but this kid of mine – she’s amazing.

Yesterday we did our first subcutaneous immunoglobulin at home in over a year

and it was really really…

good

for all of us

but especially for the girl, who was incredibly proud of herself.

This video goes for seven minutes but it was only seven minutes from the point of needling to the beginning of the infusion,

which consequently only took twenty minutes.

 

We have definitely come a very long way.