"Suffering the Slings and Arrows of Outrageous Fortune"

Since Em’s recent appendectomy was not remotely planned or expected, I felt woefully unprepared as far as a plan for surgery went. (Hmm… I guess that is why is it called an ’emergency’, isn’t it?)  I had given almost zero thought to any emergency procedures in my determination to avoid joint or spine surgery that some ignorant doc might try to foist upon us. So, when faced with an emergency, I had to wing it.

Fortunately, I have a special filing cabinet in my brain designated to store all of the minutia I have gathered over several years while learning everything I could about EDS. I had seen – somewhere, couldn’t tell you where now – suggestions about how to make surgery (and recovery) easiest for EDS patients and ‘filed them away’. Those suggestions, along with ideas gleaned from various conversations on EDS forums and important information about Mast Cell disease that I was made aware of via Dr. Diana’s work (thank you, THANK YOU, Dr. D!), all were pulled out of that overflowing filing cabinet when I needed them. It became very clear to me that every second of the countless hours I spent pouring over endless articles, websites, forums, and blogs was paying off when it mattered most.

I was able to share good information with the surgeon and anesthesiologist but I sure wish I had been a little more prepared. So, I thought I would share what worked for us, what didn’t work so well and make some suggestions of things for you to think about – just in case. I will be using these notes as a way to formulate an emergency plan to have on hand if, God forbid, Em ever needs surgery again. (I will divide this into 3 separate posts, so it is a little easier to read.)

Things that worked:

  • Joint Protection  The last thing Em needed was a dislocation on the operating table – being unconscious for a couple hours with a dislocation or even a subluxation could cause long term issues and would certainly cause unnecessary pain. The surgeon took my concerns to heart and allowed Em to place herself on the operating table. (Often, they will start the sedation prior to arriving in the OR, so you need to specifically request to stay awake.) The surgeon (bless her) took it one step further and allowed Em to wake up on the table, so that she could be assessed and assist them in moving her to the bed. If you deal with unstable joints that dislocate or sublux, this is something to talk with your surgeon about. Obviously, all staff need to be warned to be extraordinarily gentle and to never pull on any limb – I had no qualms about telling everyone who came into contact with her about this.
  • Comfortable Bed  I remember seeing a reference to requesting an air mattress while in the hospital and probably would have eventually thought to ask about it. But, as I sat beside her in the wee hours after she had been taken to her room ( and the nurses had done their thing and left us to rest before rounds began) I noticed her bed was making noise and had more buttons than I had seen on a hospital bed before. She actually had an air bed – instead of a regular mattress, the mattress was air filled and inflated around her body, gently cradling her with every move. Em said that her bed was very comfortable, something I have never been able to say about a hospital bed! If you are having scheduled surgery, ask about an air mattress ahead of time. In an emergency situation,  it might be more difficult to arrange but you can still ask. We lucked out on this one, but it is definitely something to think about – decent sleep is essential to recovery and is a vital part of controlling pain.
  • Careful Surgical Techniques  EDSers need to be treated with extreme care. Again, we lucked out with a surgeon who had experience with EDS patients. I didn’t have to tell her to be ultra gentle – she described to me how gentle she would be. She opted for a traditional incision, which she hoped would put less pressure on Em’s intestines. She did not cut across the abdominal muscle, but cut lengthwise through it. She was careful about internal stitches (presumably using more than usual and closer together) and used steri strips on the incision.  I was very pleased with her knowledge but it is still crucial to make sure a surgeon is up on the special techniques necessary. In a scheduled surgery, you would at least have the opportunity to discuss this or find a surgeon you are comfortable with. Again, in an emergency situation, it is a little more complicated. Which is why I would recommend having all of this information written up in the form of a plan that you can access in an emergency – more about that in part 3.
  • Communication For the most part, I felt heard. I spilled everything that could possibly be important to both the surgeon and the anesthesiologist and I felt that they both listened to me. I had no articles or printed info to back up what I was saying, but they listened and encouraged me to share, seeming to take my suggestions and statements in good faith. I was a mess, trying to make sure I covered everything that was important, convinced I was forgetting something important. It would have been so much easier if I had some kind of plan printed up to refer to, but, generally, everything went pretty smoothly.
  • A Helpful Phrase In a discussion on Inspire, I saw someone mention the concept of EDSers needing to be treated as gently as a newborn baby – the same level of tenderness and pressure and motion. I said this very thing to the anesthesiologist and it seemed to resonate. I reiterated how careful he needed to be of her jaw and her neck (I will speak more about her neck in part 2) and, this is a bit fuzzy to me now, but he mentioned using a camera during the intubation process so they could see what they were doing.  Her jaw was sore afterwards, but nothing out of the ordinary, so I think that part went well.
  • Medication List  Before  we headed to the ER, I took a moment to update and print off a list of Em’s medications – a couple scripts had recently changed so I needed to update it. I am so glad I did that – instead of trying to remember each med and the dosage and the recent changes, I was able to take it out of my binder of medical info and just hand it to each doctor/nurse. Ten different people probably used that list that night and the hospital ended up providing all of Em’s meds during her stay, based on that list. The only thing I wish I had included on that list, was the reason for each med because I was asked as they were prepping her for surgery.  An additional column in the chart would have given me space to add that in. Keeping an updated meds  list is crucial and having it with you at all times is the best plan.
  • Medical Binder  Any time we head to the doctor, I take along my huge medical binder and I had the foresight to grab it on the way to the ER.  Not only was the list of medications in it, but I also had Dr. Tinkle’s card with contact info and could have provided contact info for most of Em’s doctors, and a plethora of other info,  if I had to. I did come to the conclusion that my system of organization of medical info desperately needs updated and streamlined, but I was so glad I had my current system with me. It was invaluable, albeit disorganized (and heavy!).
  • EDS Knowledge  I think this belongs on this list – because having a base of knowledge was crucial in making sure I could advocate for my daughter. I cannot stress enough how you have to learn everything you possibly can about EDS. You simply cannot rely on your doctors to know anything helpful about it. We were fortunate to have an EDS savvy surgeon, but it could have easily been different. If she hadn’t been quite so knowledgeable, I could have shared with  her about the specific techniques to use with EDS patients and encouraged her to research before surgery. There is no substitute for being your own expert and advocate, whether it is well received or not.

These are the things that went really well for us – although I suspect a good part of it was simply God watching out for us rather than anything I accomplished. Nothing I knew from my reading would have convinced an arrogant, less-than-knowledgeable doc to do things differently, I know that much. But, I was able to advocate for my daughter and it gave me a great deal of peace to know that I had knowledge that could help her. That the staff was willing to listen – well, no amount of prep work can guarantee that outcome and it was the key to a good experience for all of us. It is important to have information that you can insist on for the care of your child or yourself, though and to be willing to make a stand. I learned a whole bunch from this experience, although I sure hope to never need to use what I have learned again!

Part 2 will discuss the things that didn’t go quite perfectly and that I would do differently, if I could go back and do them again.


Comments on: "Surgery Tips Part 1" (6)

  1. This is particularly interesting to me after I had an ER visit a couple nights ago. Apparently it was a very long, drawn out panic attack. When the nurse asked for my medical history, I remembered that I was diagnosed EDS in February and heaven forbid this is serious, they probably need to know that. The nurse raised an eyebrow as I said that I have a connective tissue disorder, and I spelled it out three or more times before she got it. When my doctor came in, I asked wearily “I don’t suppose you’ve heard of Ehlers-Danlos Syndrome?” he replied that he had and proceeded to grill me who diagnosed me (nice Dr. Something) where I was diagnosed (Vanderbilt, in Nashville) and when I tried to explain which type I had, I pointed out that I was diagnosed with an 8 of 9 on the Beighton Scale. He said I was going over his head there. Uh-oh. I tried explaining the scale, but as soon as I mentioned the knees bending backwards, he stopped to ask which way they bent, then decided to check that himself. “Yes, sir, they do, but the more I do that the worse it is on those joints and I would like them functioning in a few years still”. My hypothesis is that an EDS’er is a lot like a zebra in another sense…I know they exist, I’ve seen them in zoos, but if one walked up to me I’d want to touch it, walk around it, wow this is the real deal, I knew they existed but I never thought I’d meet one here!
    The ER visit culminated in getting blood drawn (I’m saving for future reference the fact that to keep me bruise-free, my arm needs the compression tape, not just a bandaid) and given an anxiety med. All in all, it wasn’t exactly a lot of fun, and I’m hoping the hospital at college (I start in the fall) will know more…and treat me like a human, not like a new toy.

    • I really hate going to the ER, so I can totally understand your frustration with your experience – spelling it for every nurse and doctor gets a little old and so does being treated like a freak. But, as painful as it is, every single experience is something to learn from so our treatment can get better in the future. Or at least that is what I tell myself!

      That is an interesting point about compressing the blood draw site – my daughter doesn’t bruise too badly, but I might work that suggestion into my final post in this series, if you don’t mind!

      I sure hope that the hospital you will have to use at college is knowledgeable and helpful!

      Thanks for commenting!

      • Go ahead! I wouldn’t have noticed it, because I tense up drastically and that supposedly makes it worse, but the first time I had blood drawn the nurse used a cotton ball and the compression wrap, and the puncture mark and pain had faded within an hour or two. The next couple of times, the same thing happened. Then I got blood drawn and the nurse used a bandaid. I had a large, painful bruise for about five days. This last time a little bit of cotton and a strip of medical tape, and I’ve got a bluey-green bruise and the puncture mark is visible. Every time I’ve been wrapped, I’ve been fine in a short while, regardless of how I behaved during the procedure.

        I hope so too. It’s a teaching hospital…maybe if I’m lucky I can snag a nice new student, train them up right. I’ve been there once before and the student who saw me agreed that I probably had EDS, but he didn’t want to diagnose it since he wasn’t a geneticist. So now I can go in and say “okay, I have the diagnosis.” and hopefully go from there.

        • Having a diagnosis makes all the difference, I think. Good luck on finding that med student and training him up! Would be great if you can do it! 🙂

          I will include your tip – if it helps anyone else, that would be a good thing!


  2. imanenigma said:

    Sounds like you did pretty well. I appreciate the tips. If I may offer something, I keep a few note cards in my purse.I have paper clipped them inside of my planner so they dont get messed up. On them I have my meds list, all surgery history with dates, and drs who performed them. Also any tests/procedures Ive had. This has helped me multiple times in not only emergencies, but appts as well. They make copies and give them back rather then me writing it.I look forward to your next post. 🙂

    • Your method of note cards is very interesting. I suppose each person will come up with what feels right for them, but that could be handy. I love the medical bracelet my daughter has – it has a USB drive built in and you can store a ton of info on it. It is great because it can plug into a computer and paramedics or doctors can easily get info. BUT, when we got to the ER at Children’s, their computer system had crashed, so I am definitely in favor of having both digital AND hard copies – you just never know what you will end up needing.

      Your system could be a solution to my problem of how to organize the emergency plan I am working on. Thanks for commenting – I will probably be mentioning your note card method in my next post!

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