Home


About


William


Ivy and Noah


Pemphigus


Donate Blood


Dear Donor


Reviews by Tiff

Subscribe Follow me on Twitter


AMB Badge


FYBF


This blog designed by Rah!Creative

Archives
Categories

Archive for April 9, 2010

Frustrations.

I find it disheartening when doctors don’t know what to do.

Really.

I take Ivy to all these professionals, these specialists in their field because she needs help.

I need help.

When they throw up their hands in declaration of

‘giving up’

I feel sad

and alone

and defeated.

Like  a couple of weeks ago, with the infectious diseases doctor and the ENT doctor.

It’s not helpful.

Don’t get me wrong, I fully appreciate the honesty and the humanity of these men, who admit they are stumped

but to say ‘I’m not sure’ seems like a cop out sometimes, a wiping of hands, so to speak.

How about ;

‘I don’t know but I am going to do some research and think about it over the next week and then we’ll come up with a plan.’

That somehow sounds better to me.

+++

Last week when Ivy was sick we called the paed on Monday,

who didn’t get back to us until Thursday.

We don’t bother calling unless we need help

it’s not like we are seeking him out socially.

If we call

it’s because we feel out of our league and need information and advice from Ivy’s doctor.

Okay, sometimes it’s for a script but our expectation is not to speak with him at that time.

It’s just a script.

I really feel very angry with him when he doesn’t stick to his own plans (we currently have a plan for a 30 – 60 minute response time from him, when Ivy is unwell)

and then I feel angry with myself for wasting so much energy being angry.

By the time he called I had medicated her myself,

forced to make the decisions, when I could have used his help.

+++

I’ve pondered the awful feelings I get when Ivy is unwell,

why I feel the need to bounce ideas and rely more on the paed than I do with Noah,

more than I have with any of the other children

and I have come to this conclusion -

I don’t trust myself.

I made all the wrong choices with William,

his birth,

his treatment

and ultimately his death

and

I just don’t trust myself with Ivy’s care

because:

what if something happened to her?

What if my choice is the wrong one?

What if something went horribly, un – fixably wrong?

I stuffed up with William so what is to say I won’t do it again?

It’s hard to accept those words.

It’s hard to convey that to another person,

harder still to a doctor.

I’m sorry but I don’t believe people skills have much to do with medical training these days.

So much is crammed into a fledgling doctor’s head that alot of the initial ‘wanting to help others’ is pushed out

and  sadly stays that way when the student days are over.

+++

So this week, after IVIG, the paed showed up and didn’t really do much of anything.

Her ears are clear but I expected that with the continuous antibiotics

and there wasn’t a whole lot for him to do in regards to her now, almost resolved, last week lurgy.

His plan for Ivy at this stage,  includes one week on, one week off of IV antibiotics.

To me, this seems insane.

For one, it goes against everything that doctors talk about, in preventing antibiotic resistance

and secondly, it is going to be just as traumatic for the little girl with access and, if you ask me, only increase the risk of port infection.

It’s just another patch.

All this (and more) was supposed to be discussed yesterday, through a phone call

but of course it didn’t happen.

I guess he ‘doesn’t know what to do with her’ anymore either.