Tuesday, January 22, 2013

Unprepared

Ted and I took Mo to the hepatologist yesterday.  We'd been waiting to meet with him again since our original appointment soon after Mo was born.  At the original appointment, he had offered to look at Max's liver slides to give us a better sense of whether something about Max's "fatty liver" had something do with his "incident" (death).  I am so naive - so stupid really.  I thought he was offering to do something for us - like in his spare time or something....but within a couple of weeks, I got a call from his administrative people telling me that they didn't think that our insurance would pay for the slide looking and that we should be prepared for a charge of several hundred dollars.  Not sure why, but it made me feel like a shmuck.  Of course he wasn't just "being nice".  For months, I've been getting calls from his office telling me that he is still waiting on the insurance and as soon as we knew who was paying, he'd look at the slides.  "WE ARE GETTING CLOSER TO NINE AND A HALF MONTHS!!!!  LOOK AT THE SLIDES FOR GODSSAKE!" is what I wanted to SCREAM!!

So, yesterday was the big day to find out what he knows.  The hepatologist only works one day a week so his schedule fills up months in advance.  Because of this, we had an appointment right smack in the middle of the afternoon.  We stopped our day to come meet with him - making it even that much more annoying when he showed up unprepared.  It's too bad too, because he was one of the only doctors who seemed to take us seriously early on.  He sat down with us and told us that he had had a chance to look at the slides and wanted our permission to talk to our geneticist about his findings (I don't really feel like getting into what he found - because it isn't anything new anyway).  NEED OUR PERMISSION?  TO TALK TO THE GENETICIST?  "Of course", we replied.  So, wait, he couldn't have gotten our permission over the phone and talked to the geneticist before we came to the appointment?  Ted even said to him, "I wish you would have gotten our permission before this appointment so that we could have an informed conversation about what you found today".  ????? DUH?!  Then he explained over and over why he thought it was important to talk to the geneticist:
"As a parent and a physician I just think it is important to get another opinion and I want to learn from him too".
Um, ok.  So call him.
"Not only as a physician, but also as a parent, I would like to speak to him and I am looking forward to learning from him.  We can all learn together."
Got it.  I don't care about "learning" anything other than WHY my child died and whether I need to worry about Mo and his future siblings.
Honestly, it was around this point that Ted and I realized that this appointment was bogus.  He just wasn't prepared.  We were there for no purpose at all....to give permission?  Something that could've happened over the phone.  Something we were OBVIOUSLY going to give.  He just needed something to talk about with us to try and create the illusion of a real appointment.
"Don't worry, we'll get through this", he said.
Get through what?  Honestly?  I asked him, "Get through what?  Are we going to learn what killed Max?"
"I really can't say", he said
So, what are we going to get through?  Because, honestly, WE aren't going to get through this.  It is going to be with us FOREVER.
GET THROUGH THIS!?  Sometimes I really hate people.
What a waste of time!  Seriously.  All it served to do was stir up old anxieties and fears.  And, that's where I am now - full of fear for my second little boy.  Sometimes it is all really just too much.

2 comments:

jessica said...

Oh Abs, I am so very sorry. How upsetting, painful and frustrating. And how incredibly unfair. All of it. I wish there was something that I could say to make it better and to help ease your fears. I am sending you, Teddy and, most especially, Maxie and Mo all of my love and strength. xo

GrahamForeverInMyHeart said...

It sounds as if you are a wonderful mother. You do everything possible for your children.
Unfortunately you've learned early on that some things are beyond our control. I always believed that if I did all the right things, everything would work out as it should. Unfortunately, as you know, that isn't always true.

For those whose lives do seem to work out perfectly, I think there is an element of good luck in that. And we don't know what the future holds for them or for any of us.

Enjoy every day with Mo, as you did with Max. Love him (obviously you're crazy about him). And I hope that all goes well for all of you. You're doing all that can be done. If worrying could prevent problems, our kids would always be safe. Worrying doesn't help.