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,
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.
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
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…
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.
Let’s say six months ago there was a meeting of people in the same boat as our family finds itself.
A group of people who deal with immune deficiency in one way or another
and we couldn’t go.
Ivy was in the hospital at the time.
I’m not a part of that group any more.
What happened was a cascade of events, which, true or not, filtered down to me in the small hospital room
and it hurt.
Rational is not a word I would use for myself when I feel as though my family is being attacked or judged,
so, I had words with the people involved, which included a person who I had considered my friend and Ivy’s then immunologist.
I also lost the proverbial plot all over the internet – mostly within the two online forums where those involved presided
and then I left them.
I lost a community and some people I had become close to and cared about
but in the end, I couldn’t deal with the drama.
I burned bridges.
Groups like that can become a place of one-up-man-ship.
“My kid’s sicker than your kid” mentality
“you have it easier because it’s your child who is ill and not you ” kind of stuff.
One person even proclaimed that sick kids “get more” because they’re cute.
Things I’m not interested in.
Things that are exhausting when there is already so much to deal with in this world.
The head of the group said I needed to give the main person, who had caused my upset, a break because her child was staring down the face of a lung transplant.
Maybe I should have
but she didn’t give me a break when she was stabbing me in the back in a place where I was unable to defend myself or my family
because I was in the hospital with my septic daughter.
I guess in the world of immune deficiency, to quote another member of the group ”sepsis is nothing – everybody has been septic and survived”.
Hindsight is a wonderful thing.
I should have been the bigger person, I suppose but even if I had have been, I wouldn’t be able to trust them again
and besides that – something like immune deficiency and how ill your child is because of it
is in no way a competition.
Regardless of what kind of PID or the severity of it
we should all be in it together, supporting each other through the similarities and challenges of the disease.
The other day, after a mother had mentioned how sick her baby had been with a Summer cold,
another person turned to me and said;
“you must get really sick of people complaining about frivolous things like the snuffles”.
To which I had no answer at the time
but I’ve thought about it a lot over the last couple of days and I want to say
that it doesn’t matter what kind of sick your baby is.
Sick is sick.
Whether it be a cold or something else,
it’s all hard
If the child is unwell, the family feels it.
The parents worry
and that is a perfectly normal emotion to have when your baby is sick.
I don’t feel as though others have no right to be anxious about their children’s health just because Ivy struggles with her own.
All I feel is sad and sorry for the child and the parents, that they have to endure that period of time when all is not right with their world.
Sick is sick.
It’s not a competition.
The only winner in all of this would be a healthy, happy child.
From my family to yours, we hope, however you celebrate the holidays
that it is full of love and light.
We are all enjoying being together again.