There is a grieving process when you give up on a doctor

or rather

a doctor gives up on you.

Especially a doctor who has walked our journey with us from the beginning

and I am grieving that, I think.

There’s that

and the panic I feel at having to start again.

Finding another who understands Ivy’s disease process is difficult

and leaving somebody who knows more about our family

and especially our daughter, than most other people, is scarily unfathomable much of the time.

Truth is, having him as Ivy’s paed has been like having a third parent – he knew her that well

and I felt that comfortable with him that I could bounce thoughts off him easily and without fear.

Sure, there were plenty of times that we disagreed and became frustrated with differing points of view

but when all was said and done we all wanted the very same thing;

the best for Ivy.

It has been three weeks since the paediatrician couldn’t look me in the eyes

and told me that he would follow up post hospital admission

the next week.

As soon as he said it we both knew that it wouldn’t happen.

In fact it has been obvious that he no longer wants to be Ivy’s doctor for a little while now -

almost two months since I asked him for a new plan

and help with details surrounding adrenal issues

and Ivy’s ongoing weight issues too

and three months since I have felt that he has been involved in her care at all.

It’s like after the long hospital stint in March through May he suddenly balked.

He was amazing during those months.

Amazing.

When Ivy had the arterial hit in theatre and I could not go into her

he did.

I was on my own and frightened and he was there for Ivy in a way that made me feel honoured to have him as her doctor.

He was thorough and on top of each issue as it presented,

when she was sick he was clearly worried about her

and when he wasn’t available he left clear plans in place

and I loved him for it.

Not in any romantic way at all

but in an appreciative way.

I’ve always had a thing for the protectors in this world

and before you ask -

yes

I thanked him often and told him how much his care meant.

I may vent my frustrations here (he swears he doesn’t read the blog)

but I always say thank you when thanks are due.

He pushed for the growth hormone, did all the paperwork and made application

and it was he who phoned up the immunologist and pleaded Ivy’s case for the subcutaneous Ig.

When we were sent to Westmead though, it was like he cut some invisible tie he had with the girl

and even though he has seen her once since the whole children’s hospital debacle (it was very strained)

and has put his opinion forward  throughout the last three hospital admissions

his absence has been felt keenly

not only by me but by the small girl too

and the nurses, who  ask if he is coming to sort things out.

I feel abandoned almost and very vulnerable.

I could say I don’t understand what went wrong but that wouldn’t be true.

I’ve thought about it a lot.

Perhaps I pushed too hard for what I needed to feel safe, in looking after Ivy,

perhaps he feels helpless because he can’t fix things

or perhaps he thinks we are all becoming too familiar with one another and doctors are not supposed to become attached.

There are a myriad of reasons, I suppose, for communication break down

and perhaps I will never know

but I do think that he is done looking after us (and I say us because when you are a paed, you don’t only have to look after the child – you have to look after the family too)

but he hasn’t found a viable way to discharge us from his care yet.

I don’t want to prolong the inevitable though.

I need to find another doctor who can fill his shoes and then some

and that is going to be hard,

living in a rural area,

with limited access to doctors who know about immune deficiency at all

and who care enough to become involved -

yes, care factor, when you have a chronically ill child is important

and being available is too.

I hear about friends, with children who have the same disease as Ivy, who have these amazing doctors looking after them

and strict plans and protocols and guidelines for hospital admissions

and I want that too.

I want that security for Ivy and yes, if I’m honest, for me as well

but I’ve no idea where to start to find a doctor like that here.

My first choice (after Ivy’s current paed) will not take Ivy on

and my other choice works from the same rooms and it would feel very strange.

I want to do it now though, while Ivy is more or less okay

and I want to give the paed an out

before he feels the pressure of our needing him again when Ivy becomes ill.

Why that makes me feel like crying,

I’m not really sure

but like I said, I think there must be a grieving process when it comes to letting go.