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.