The Emergency RoomNo one ever expects a visit to the Emergency Room (ER). A few weeks ago Nicholas, our five year old, was having a typical day recovering from a complication from recent surgery. Recovery was going well then suddenly it wasn't and we had to rush off to the ER. Not even the one in our local town, an ER 6 hours away.
I grabbed a few outfits for myself, and 5 outfits for Nicholas. We jumped in the car and headed off for our journey. When we arrived at the ER, they were ready for us and rushed us into the back very quickly. If you've never been in an ER during cold and flu season, it's extremely scary. People are very, very sick. As we were checking in with triage, a young boy vomited at our feet. Nick and I wore masks during the 5-7 minutes that we were standing in the waiting room, and we continued to wear them every time we stepped out into the hallway in the hospital. This was big deal for Nick. He would rarely wear a mask but after what we saw in the waiting room, he personally asked for a mask. I very clearly saw why hospitals have flu policies. It was a war zone.
There is also a lot of screaming in the ER. Some of it was coming from our room as Nick had to have stitches in his back. Despite all the attempts to relieve his pain, there was still a lot of screaming. So much so that the ER Manager came in and quizzed us on what pain relief and anxiety medicines had been chosen. After all of that, the Dr. told me to prepare for surgery tomorrow. That there was about a 95% chance that he'd have surgery. The team started infection protocol.
What We won't Tell You on Hospitals Surveys & MindfullnessMy children collectively have been in the "meningitis" protocol 3 times, and I have never understood it. It's also never been explained well by anyone at the hospital. So I found this from the National Institute for Health and Care Excellence (NICE): https://www.nice.org.uk/guidance/cg102/chapter/1-Guidance
That website was able to alleviate my mind from the constant strain of what are they doing, and why they don't take him off high dose antibiotics even though cultures continue to show no signs of meningitis, and how long can these protocols take! It gave me a window in to some of the decisions they were making and how they were opting for a more conservative approach. When I asked for guidance, all I got is there is a "high risk of infection". That's not good enough for me. Always, there should always be hand outs or a discussion. This is the same scenario I've had with respiratory protocol wondering when we ever exit the different phases of that protocol as well. One might think this is specific to a hospital and how they communicate but so far this has been every hospital. I want our doctors to tell us their concerns, what they're watching for, the different twists and turns this could take. I want you to tell me so much that it makes you nervous that you may be saying too much. That is the point that I'll be satisfied as a parent. I'm on your team but I need to have more information. Hand me some sort of detail like the above or ask me how I want to be communicated with, it will go a long way. Why don't I suggest this in hospital surveys? It's because it's not about the individual providing the care, it's more a systemic issue (legal, policy, physician training,etc.).
With that information in tow, we settled into our room for who knows how long. The good news is that surgery never came and never had to happen, and that's because of the brilliant hands and minds of these physicians. With a lot of sitting in the hospital room, I looked for something to read but only had my phone. I downloaded Mindfulness, 25th Anniversary Edition, by Ellen J. Langer. This book really helped me to stay open to the process in the hospital. It helped alleviate the tension I feel in my chest wondering when we would be released when Nick is showing signs of wellness. It helped me surrender to the experience, and be open to what was happening around us. Nick and I also were so at ease that we giggled a lot and had tons of fun with the CNAs and Nurses at every shift change. Every day I really didn't know what day it was because I wasn't paying attention to time, just the task at hand, getting better.
When it came to release day, we were leaving with quite a bit to do at home. Lots of care giving and medicine administration to follow, sometimes nurses or doctors believe parents can't do what they do or shouldn't. Others have tremendous respect for you, the partnership of parents and medical staff and will help you in caring for your own child. I encountered both perspectives. In Mindfulness, there was a section that I'll paraphrase that suggests that you can undermine someone's ability causing them to question it, or even lose their confidence or ability completely. I think in the hospital environment it's tough. I am sure you see a lot of things that scare you. I ask though, please stop questioning or undermining a parent's confidence. Release the parent and the patient in the best condition possible, please! I cannot tell you how many times I have heard, "better safe than sorry" to intimidate me into doing something the nurse or physician wants to do. I have never once been sorry, and never have I felt my child is safer because you chose what you wanted to do. Sometimes you ignore my voice, and it's as difficult as when someone ignores yours. During our recent stay, I explained that it was more important for me to get on the road and head home to administer timed medicines at 1am than clean the site that wasn't due for cleaning for 2 days, and change a cap that I was going to change when I got home. Despite my voice, the nurse still felt it was "better safe than sorry", and couldn't believe that a parent could take care of a central line when hospitals are taught how scary and critical these lines are. I gave you confidence when I told you that I could help you if you accidentally pulled the needle out but you still ignored me. You set the open saline syringe on the bed, and made other errors but being a veteran rare disease parent I see errors all the time. Your own anxiety and fear can create some of these errors. You are human, and so am I. Therefore we should both leave with our confidence in tact always.
Dr. Langer's book continues to help me with so much good advice about the rare disease, being an even better worker, and remembering to try and be mindful in my daily life. As for Nick, he continues to recover well, and we're so thankful for that and for those who are brilliant in their professions. One nurse even fashioned some clothes out of mesh so Nick could make it through the night with dry clothes! Just amazing! I think some of the giggling and fun we had with the staff was some of the best medicine! I really believe some sort of Mindfulness immersion in the hospital for care givers, parents and staff may be beneficial for all.