Friday, December 16, 2011

Boston Children's Hospital

So, I’ve been working on getting an appointment with Boston Children’s Craniofacial Clinic since the middle of October.  I can’t believe what they make you do just to get an appointment.  They actually wanted to have her operative reports from her two jaw reconstructions before scheduling an appointment!  I had to talk my way out of that one.  If you’ve ever requested medical records – you understand!  I did request them and I am going to send them as soon as I get them.  Which will be who knows when.  Although I was told by their coordinator that they must have them prior to the appointment.  So, I have more phone calls to make. 

Anyway, I provided her Medical Summary that I made that summarizes her life in 4-5 pages.  Just a brief medical history…

I also sent photographs of Harlie that showed her mouth, jaw and ears.  And I sent her CT-Scan.  And I just heard from the coordinator.  They finally reviewed the information and determined that they think it would be worth our while to make the trek up there for a second opinion. 

So, our appointment is February 24th.  I haven’t flown on a plane since before Murphy was born.  I’m not excited about having to do it again.  But, we’re thinking that Harlie’s going to LOVE it.  So, I’m going to be strong for her.  I hope. 

The good thing about this clinic is that they have both a plastic surgeon and an oral surgeon.  So, they have both options – jaw distraction and jaw reconstruction.  And that’s the comparison I really want to see.  Well, I don’t really want to see it – but you know what I mean. 

I just got another call from the coordinator and she is adding another doctor to our appointment list.  She wants us to see their geneticist, too.  So, I think that’s a total of 4 or 5 docs.  She said most of them will see her at one time, so she said to be prepared to walk into a room with a dozen people.  No sweat.  Poor Harlie.  I can’t imagine being her sometimes. 

So, because she’s seeing a geneticist – they want her medical records for that specialty, too.  So, that’s another several phone calls and faxes.  Ugh.  I know it doesn’t sound like much, but when you add up all these little things, it becomes a lot.  If I could just request the records once, that would be one thing.  But, I’ll have to call.  Then I’ll have to fill out the form and fax it in.  Then I’ll have to call to make sure they received it.  Then I’ll have to keep track of how long it’s been and then call again to make sure they are working on it.  Then, I’ll have to pay for it.  And then, maybe, if I’m lucky, I’ll get the records before February 24th

And I have to do that for two different hospitals. 

It’s now been a few days since I wrote that.  Here’s the update:

I called the medical records department last week to check on the status of our records (the jaw surgery ones).  Back in October I called and had them fax the request form to me.  I then faxed it back.  Two weeks later, I called to check on the status.  She said they never received it.  Yeah, right.  Whatever.  So, I faxed it again.  This time I called right afterwards and confirmed that she received it and that she could read the dates of service that I wanted. 

Another two weeks went by.  I called again to check on the status.  A different person helped me this time.  She asked me a bunch of questions and put me on hold – for forever.  Not a good sign!  She finally came back to the phone and told me she had no record of my request.  Are you kidding me?  Luckily I remembered who I spoke with all the previous times.  So, I told her and she said, “Oh, she no longer works here.”  Of course.  But she went and looked through her things and found the request and most of the paperwork.  Good.  So, she mailed them to me.  But they forgot one report, so now I have to call and get that sent.  It’s really never ending. 

And after thinking things over the past few days, I think I’m going to tell the craniofacial coordinator in Boston that we don’t need to see the Geneticist.  We’ve been there done that, and I don’t see that there’s anything else to discuss.  And I don’t see having to pay for that kind of service when I don’t see a need.  And if seeing someone requires me to request medical records, forget it. 

Now, I do want to see an oculoplastic surgeon (to fix her eye).  So far, I don’t have any prospects for that.  And I think that would make a big difference in her appearance.  Plus, she’s been complaining about that eye a lot lately.  So, I’ll have to call her and see if they have that kind of surgeon there. 

Just found out that the oculoplastic surgeon is on maternity leave.  Oh well, so much for that.  


Another update since I wrote the last update TWO weeks ago!  If I just had more time, I would have such a better blog!

Anyway, I got the medical records, but the one report that I really want (and feel they really need) is the anesthesiologist’s report of when she went into cardiac arrest during her wire removal in February of 2010.  So I immediately called and asked specifically about that report.   She said she’d get it and fax it.  I had her send it to Tom’s fax (since we don’t have one).  Which, now I’m wondering if we should just get one.  There have been so many times when it really would have come in handy. 

So, Tom gets home that night and I look at what she sent – and it was operative notes (like a flow chart) not his dictated report.  I really want to see what happened – what were the first signs of trouble, what they did, etc.  So, now I have to call AGAIN and see why they didn’t send me that report. 


See what I mean about how many phone calls it takes to get anything done???

So, back to the appointment, I hope the weather cooperates and it's not too bad in late February (no scary snowstorms, please).  The appointment is on a Friday afternoon and our plan is to fly up there in the morning.  I don't know if we would be able to make it back to the airport in time for a flight back home that night (since our appointment isn't until after 2pm, and will likely run past 5pm).  So, I think we might just plan on staying at a hotel to make it less stressful, and then fly back on Saturday.  

That is just two months away now.  I hope that the appointment will make me feel better about the decisions we have to make.  Although sometimes, more information can make decisions even more difficult.  

Okay, well that's it for this post.  I am at school with Harlie today.  It is the last day of school before the new year.  I will work on another blog post while I'm here, so hopefully I'll have more for you tonight/tomorrow.  

Thanks for reading!


Tanya said...

We are followed by the team at Children's. Message me at FB if you have any questions. Meaghan had her jaw reconstruction there (and 2 revisions) and we'll do her distraction(s) there as well. We've worked with Padwa & Labow most closely. Upton did her microsurgery. Nargosian is her most excellent anesthesiologist and we trust no-one else. Irons is her geneticist. We never saw her in clinic. Who does occuloplastics?

Clinic is a mess (IMNSHO) and I would NOT count on being out of there by 5. Appointment times mean nothing (IMO). We've been out by 4:30 but we've also been held up until 6:30. I, personally, HATE clinic and do not find it a productive use of MY time. It's very valuable for them to all see her at once but once a plan of action is proposed it is, IMO, important to insist on follow up appointments with the doctors involved (not the whole team) to discuss DETAILS. During clinic they spend a lot of time talking to each other and not so much time talking to the family.

I can't wait to hear what they propose for Harlie.

Christy said...

Interesting. And all good information. Glad to know I was thinking on the right track for getting out of there. What does IMNSHO mean? I will definitely message you after our appointment. Thanks for the info!

B-Mama said...

You are amazing. That's all I have to say for now!! Keep rockin' the phone calls!

Susan said...

I confirm everything you are saying Christy. Nothing is handled in a simple phone call. Almost everything requires follow-up.

I'm nervous and excited for you. The process of making surgical decisions is HUGE.

I hope it all pulls together seemlessly. Love and hugs.

Amy said...

Hey, my old boss in Florida just started working at children's hospital in boston. She loves it. I will put in a good word for you.


Lisa B said...

WOW! That is a lot that you need to do.

I hope you all have a wonderful Christmas.

I've nominated you for The Versatile Blogger Award. Details of what is involved can be found on my blog.