Tuesday, April 10, 2012

Asking the hard questions

Even though on here, I have no problems expressing my opinions of the doctors and medical care that Maddy has had, when it comes to expressing those same questions TO the doctors, I find it much more difficult. I can tend to avoid confrontation with them and just go with the flow rather than being assertive. I think that if I were somewhere where it seemed like doctors actually valued the opinions of the parents of their patients, I might be more open with them (and indeed, with the few doctors who I feel DO value my opinion, I express them more openly) but here, most doctors seem to view parents and their opinions as more of an annoyance rather than a valuable input into the decision making process.

On Friday, we have our next cleft appointment and I've been going over and over it, the questions I want to ask, the things I want to say... people tell me to write that stuff down so I figured I'd write it here - and then maybe after Friday I'll update with how much I actually DID ask/say and what the doctor's response was.

Just a foreword: Maddy's cleft doctors has to be probably the one I am least satisfied with. He is rough with Maddy, forcibly opening her mouth to examine her cleft where other doctors try a much gentler approach (the kindest are the dentists, they actually play with Maddy, tickling her to make her laugh, and when her mouth is open, they sneak a look then). He is at times rude and condescending towards me (although at other times, he has seemed to be trying to be sensitive). And he has told me one thing while writing something completely different on Maddy's file. Unfortunately, I have absolutely no say in which doctors we see. He is one of the most superior in his department, from what I understand. I cannot go to another hospital, unless I wanted to take Maddy out of Hong Kong. So despite my annoyances, I just have to deal with it. 

The Questions:

Why did you tell me in February that Maddy's surgery would be in 1-2 months when you wrote on her file that it would be 3 months? Did you have any intention of planning the surgery before now? 

When you were given the recommendation by our private ENT last November that Maddy's surgery should be performed as soon as possible, why did it take you three months to confirm that surgery was indeed safe? I realise that we had travel plans in late December, but why couldn't the anesthetist check her before we went? After that recommendation, why are we more than five months down the road and the surgery has not yet been performed?

After the surgery, how long do you expect that Maddy will be in PICU? How long do you expect that she will be in the surgical ward? And how long will her recovery be? How soon after surgery is it safe for her to fly? (I realise that it is impossible to predict exactly how she will tolerate surgery, but in children with similar clefts/similar airways, what range should we expect?) 

Since last November, we have put all of our plans on hold. Apart from Christmas, we have not left Hong Kong. I withdrew from my university classes so that I could support Maddy through surgery. We were given the impression that surgery would have been significantly earlier than it has been (on a side note, not only have my plans been on hold - my Mum has agreed to come to Hong Kong to help us with Maddy's recovery period. Her plans have also been on hold now for the past four months). We cannot continue to be so flexible and we now have travel plans at the end of April. If you cannot guarantee that Maddy will be safe to fly before we travel, we will not be able to do surgery within the next few weeks. 

Starting from the end of May, I will be working full time for five weeks. I cannot miss any days and cannot change the dates for whatever reason. As a result, we need to have the surgery completed and Maddy out of hospital by May 21. I don't need much notice for surgery - you can call me at 7am and tell me to have her in at 8am - we just need the surgery done within the first half of May. Please do everything within your power to make that happen.

In addition to these questions, I need to also remember to a) provide him with Bernard's blackberry number so that he has a way of contacting us while we are overseas (my phone does not have roaming), and b) ask him for his contact information if I need to contact him directly. 

I would love to hear anyone's thoughts and comments on my questions - I'm continually second guessing myself. Is it actually beneficial to be so upfront with the doctors, or could I make things worse for ourselves by doing so? Should I say more? or less? I feel like I'm going through some kind of "special needs mum initiation" here...

1 comment:

  1. Poor you. One of my university friends was a social science major and when I last met up with her she had been hired by the medical faculty in cape town to teach doctors compassion and explain to them how to be less cerebral and treat patients like humans and not case studies. Sounds like Hk could do with that. And maybe you are the person to do it!?
    Drs are taught a certain emotional detachment that can go to extremes depending on their basic personality, and one hopes that their behavior is not deliberate but rather not conscious and a little "mindless" .
    I think as they are taught to overlook physical pain in the patient, they too overlook the emotional pain in the parent.