(Don’t) Follow the Plan

First, a quick update on two of our friends: Colby is home! As it says on his blog, he went before the Doctor’s Parole Board and they released him on good behavior. As of this writing Katie is still scheduled for a Glenn Shunt tomorrow. Keep this young lady in your thoughts.

If you are putting together a heart book, a good starting point is a copy of the surgical notes. The surgical notes are written by the surgeon (or one of his assistants) after an operation; basically they are a “play by play” description of the operation. Modern operating rooms can be outfitted with recording equipment; the surgeon describes the operation as he works. A boom microphone above his head picks up his words and the tape is transcribed later. (Modern operating rooms are amazing, a surgeon can pause long enough to say “Please replay the MRI from last Monday” and it will appear on a video screen. Usually there is a computer tech controlling the system, but more and more often the computer can do it automatically!)

Surgical notes are very detailed, as operations have become more and more complex the level of detail in the notes has increased. Alfred Blalock’s notes on the first Blalock-Taussig Shunt are an incredibly short two pages. (Page One, Page Two) In surgical notes being written today, you may read a page and a half before the first incision is made.

Reading the notes are very difficult: they are meant for the official medical records. Normally you won’t receive a copy of them, you will have to ask. If you or your child are still in the hospital, getting them could be as simple as asking “Say doc, can I have a copy of this for my personal health records?” If you’ve recently been released, make an appointment with the surgeon. You’ll probably have a follow up appointment anyway, let him know beforehand that you’d like a copy of the surgical notes… and for him to go over them with you. Surgical notes are written in “Medical Talk”. If you don’t speak Doctor and have a good working knowledge of Anatomy, you’re going to be lost. That’s why you want an expert to review them with you – and who better than the person who performed the procedure? (It would help to give the doctor ample warning and to discuss the notes during a regularly scheduled appointment, even if you have to make an appointment just for the discussion. Extending your “usual” appointment really isn’t fair to his other patients.)

If you had your surgery a long time ago, you will have to contact the hospital where the surgery occurred and request the notes. Be prepared for a wait. You will have to fill out a form to release the records (even though they are your records)… the HIPAA laws require it. And then… be patient. Your records may be stored somewhere away from the hospital, and someone’s got to dig them out. That might take a while.

You really need a copy of all your surgical notes, if you can get them. Surgery is like Chess – everything starts from the same point, and there are a limited number of opening moves. All Bi-directional Glenn Shunts, for example, start the same way. Surgeons are the Grandmasters; they have the ability to think three steps (or more) ahead and they know when it’s time to deviate from the accepted course. You can’t learn this skill by reading a book, it only comes with training, repetition, and an inborn skill. They just know what they need to do next, how it is going to affect the body, and how to react if a crisis develops.

Every surgery is different, because your surgeon is reacting to what he finds inside of you. So even though we may share the same defect and the same surgical procedures, our insides may be totally different. So get those surgical records, having them could save your life!


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6 Responses to “(Don’t) Follow the Plan”

  1. carolyn compton Says:

    steve, have ebayed and found a copy of the movie…it is coming from western australia (I am in blue mountains, sydney in the eastern state of new south wales). every day since the post i’ve looked forward to seeing it.

    you’ve been giving me things to think about for my boy Clarence’s next appointment next month. He and his twin brother, Fergus, are 19 months and he had the bi-directional glenn at 7 months. trying to rev ourselves up for the next cardiology appointment because so much saturation of the whole hospital experience/s its tempting to go “how would i know anything about heart surgery? okay, whatever you think”. i found it hard to know what i need to ask or contemplate, having no experience previously. Thankyou.

    One of the best pieces of advice i did get was “talk to the anaesthetist”. they are who keeps your child alive. They are undervalued by gen. public in my opinion after discussing clarry preop. with him. later, i found out he went voluntarily to other countries to do heart surgery. 24 in one week!!!!

  2. Steve Says:

    Ok you are ahead of me… I hadn’t even considered writing about talking to the Anesthesiologist! Boy, I’m slipping! And that surgical team mentioned in your link are a really dedicated group of people!

    I’ve got a good little book that comes in very handy: Illustrated Field Guide to Congenital Heart Disease and Repair. I got my copy off of eBay, perhaps you can find it there. It’s about $50 US, It’s wire bound, small enough to fit into a purse, and describes EVERY heart defect. It also describes almost every Congenital Heart Surgery, Electrophysiology (the heart’s electrical system) and drugs for cardiac patients. A great, informative little book that will almost literally lead you “out of the wilderness”! Try to find this book and purchase it if you can. You can follow this link but I’m not sure about getting it shipped: http://www.pedheart.com/?id=guide1

  3. Shaun Thomas Says:

    The surgical notes for my 1984 heart surgery was also two pages, unless you count the drawings someone made during the surgery of what they were doing. They way it was described seemed so routine! Heh.

    Patient with extensive history… bla… bla… induced hypothermia… bla… bla… presented with isolated dextrocardia… bla… bla… congenitally corrected transposition… bla… bla… juxtaposition of the atrial appendages… bla… bla.. dacron patch… bla… bla… closed unexpected secondary VSD… bla… bla… sutured moderate ASD… bla… bla… widened pulmonary artery from 7mm to 14mm… bla… bla… mitral and tricuspid valves appear fused together… bla… bla… surgically separated… etc.

    Apparently I was something of a celebrity within the hospital after the surgery, but I wouldn’t know it from reading the terse surgical notes.

  4. Steve Says:

    Wow! That *is* pretty concise!

  5. carolyn compton Says:

    I just realised there’s another name for anaesthetist.

  6. Steve Says:

    No big deal, just a difference in the titles. The job is the same!

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