So, Part 1 described the things that went well for us during Em’s emergency appendectomy. Thank God, all went well and was much easier than I would have thought (if I had had time to actually think!). With EDS, it is so unusual to have everything go smoothly that I was pleasantly surprised (shocked, actually) at how great the whole episode went. However, there were a few things that weren’t exactly ideal and that I will be able to learn from. I will be focusing on this in Part 2 – we can learn from both the good and the bad.
What didn’t go so perfectly:
- Hard Collar This is my biggest complaint and still has me pretty ticked off, almost 2 weeks later. When I spoke to the anesthesiologist, I expressed how concerned I was about Em’s neck (instability, etc) and how it was recommended that she wear a hard collar during the surgery. [Ok, no doctor actually recommended this, I had read how other EDS patients who had been through surgery wished they had been in a hard collar because their neck was totally messed up afterwards. Like Em doesn’t have enough neurological crap to deal with already. And it was the middle of the night and they couldn’t exactly call Dr. Tinkle to ask – and actually I have no idea if he would have agreed with me. My personal opinion is that it was a precaution that was wise.] The anesthesiologist I spoke to, said he saw no reason she couldn’t wear a hard collar and they even tried one on her before taking her up to the OR and took it with them. According to Em, and I will be speaking to the surgeon when we go to our follow up appointment in a couple weeks, someone (not the surgeon and maybe not the anesthesiologist I spoke with) made a snap decision that the hard collar was unnecessary because ‘ her fingers don’t tingle when she moves her neck’. I have a real issue with that, because I was assured that she could wear it and trusted she would. Fortunately, her neck seems fine but that was a risk I was not willing to take and for someone with zero knowledge about hypermobility to make that decision is not acceptable. Whoever made this decision needs to understand that you don’t mess with the neck of an EDSer. I don’t know what else I could have done to change the outcome, but I would somehow get more agreement with the whole surgical team so more people were in on the decision and one person couldn’t simply undo it. This was very frustrating and I want to find out who made the decision and make sure this doesn’t happen to another EDSer in the future.
- Pain Control They were pretty diligent about keeping her pain under control, but I suspect they could have done a little more. I felt like the fact that she was already in a great deal of pain prior to appendicitis, meant they needed to be a little more conscientious about controlling her pain. Also, we had some mixed messages about pain control. One nurse would imply Em needed to be weaning off pain meds and another would say she could ask for additional pain meds if necessary. So, I am not sure if we should have asked for more or if what she had was good enough. Pain is always such an insidious part of her life and it is so difficult to manage. The reality is, there will be pain after surgery – that is unavoidable so I think this aspect of our experience was ‘ok’. I just have a nagging suspicion it could have been better than ok. Definitely something to address with your surgery team so you have the best assurances of pain control.
- Nausea Control They did a pretty good job controlling her nausea, but my biggest complaint was that we had to ask about getting something for the trip home. A two hour trip home with a child who is recovering from surgery, who fights nausea everyday and who gets car sick on a good day obviously needs some nausea meds for the trip home. I suggested a scopolamine patch – it is used for motion sickness as well as post surgical nausea – because I thought it would be a good option. (I was given one after my kidney stone procedure and I will say that the patch is AMAZING. No side effects like with oral nausea meds and one patch lasts 3 days. If you have motion sickness or are prone to nausea, seriously, check into it.) Anyway, they looked at me like I was nuts and finally got a chewable Reglan pill for her to take on the way home. This complaint can probably just be chalked up to my know-it-all attitude, but, still, it would have been nice to have them at least consider my suggestion, particularly since she has been battling nausea ever since. Personally, I find nausea even worse than the pain after surgery, so I take this really seriously for my kid. FYI, they can use the scope patch PRIOR to surgery to minimize post surgical nausea. Definitely something to discuss with your surgical team, if nausea is a problem for you.
- Restrictions/ Dismissal Instructions I had concerns about what our discharge instructions were – Em is supposed to start water therapy in the next couple weeks and I just couldn’t see that was a good idea until she is well healed. The doctor on the floor came and talked to us and said she just couldn’t be immersed in water for 7 to 10 days, after that, swimming was no problem. But therapy is not the same as going swimming and I think he was pretty clueless about how EDS was going to affect her healing. The surgeon originally said she wouldn’t even guess how long it would take Em to heal and bounce back, so I felt we really got some mixed messages. Rule of thumb, for EDS healing is twice as long as a normal person. I don’t think anyone beyond the surgeon took that into consideration. This might have been one point when the team forgot she was actually a ‘zebra‘ and not a ‘horse’. My solution: just hold off on scheduling therapy for a couple weeks, probably until after we see the surgeon for our follow up appointment just to be safe. And just encourage Em to be careful about lifting anything heavier than the cat (because there is no way I am going to be able to prevent her from lifting that cat and the cat isn’t very heavy anyway). It strikes me as a little ridiculous that I have to make this stuff up as I go, but, honestly, the doctors probably guess as much as I do when it comes to EDS and might be less accurate, since I know this child better than them.
- Hydration/POTS When Em got to the ER, she was already dehydrated and getting more so by the minute. By the time they told us she needed surgery, she was so dehydrated she had no tears to cry. Her mouth was so dry the skin was actually tearing. She couldn’t even have ice chips, but we finally got a swap to dip in water so we could moisten her mouth a little. ASK FOR THIS IF YOU NEED IT! It is a small thing but something that can make a real difference in your comfort level. I really wished I had some Biotene mouth spray in my purse for her. More importantly, as we got ready to get on the ambulance, I told them they needed to at least give her some IV fluids or they were asking for trouble – as in, she would have increasing problems with her heart rate, etc. They said she couldn’t have much because of surgery but they would give her a little. I think they gave her very little – just enough to shut me up. Now, I know you shouldn’t have food and liquid before surgery but they can make sure you are hydrated even before surgery and that is what is recommended for POTS patients. It all worked out and she did well without hydration, but this is definitely an area I would have addressed in a stronger way if I could do it over again.
- EDS Weirdness There is a lot of weird stuff that comes along with EDS: odd metabolism of meds – EDSers can be either too sensitive to small doses or quickly metabolize huge doses; temperature regulation – another part of dysautonomia; poor reaction to local anesthetic and so on. I warned them about all of this and they listened – I just don’t know if anything I said sunk in. So, I have to put this on the unsatisfactory list, because I just don’t know. These are definitely things to share with the anesthesiologist and surgeon when preparing for surgery – you don’t want them caught off guard if EDS weirdness occurs during surgery!
I feel incredibly fortunate that this experience went as well as it did and that the complaints I have, for the most part, are fairly minor. Some, like the barely adequate pain control and nausea issues, are understandable in that this was an emergency. I think with planned surgery, at least, those issues could be better planned for. The other issues I had, could also likely be better with time to discuss it with a surgery team. To a certain extent, emergency surgery is just going to be rough and I think we got off very lucky.
Of course, there are some lessons that can be learned from our experience – both for me personally and perhaps even by you. Each EDSer has their own personal issues that would need to be addressed in an emergency situation, so any plan would need to be individualized, but there are surely some generalizations that can be made and it is always good to be thinking about what can or should be addressed.
In Part 3, I am going to attempt to pull all of this together into some dos and don’ts in Part 3 and see if I can eventually formulate some kind of plan that I can have on hand, just in case we ever end up in a similar situation. The final plan might end up being Part 4 – it is all rather lengthy. I will be working on this over the next couple days, but if you have any suggestions or personal experience that you think should be included, feel free to make a comment or email me. I truly believe the fact that we (the entire EDS family) can communicate and share info is our biggest saving grace. I have learned from so many I have come into contact with online and I am happy to share my own experiences!