I may not be a healthcare professional, but life is an amazing teacher and a couple years ago, I was schooled in a lesson I flunked but hope to NEVER repeat!
November 2017, my husband was scheduled for a colon resection, as a result of diverticulitis. He followed all the “directions” the surgeon gave him and arrived to the hospital ready for his surgery. Being a natural born protector, I had no intention of leaving his side until we left to go home together…no matter how long he had to stay!
But I was not as prepared as I thought I was. Not long after my husband’s surgery was completed, we ran into some issues. Issues I was not aware I had needed to predecide how to handle. I have zero issue advocating for those I love! I am sweet but I can be fierce! However, because I didn’t do my homework on what is normal or acceptable for his particular surgery, I wasn’t quite sure how to advocate for my man.
So, I wanted to put in writing the few things I’ve learned that can hopefully be helpful for you before you find yourself as the next patient or advocating for someone you love.
Number 1 – Before picking a surgeon or doctor, BE CAUTIOUS… provided you have the time and it isn’t an emergency! Ask people who they recommend. Interview multiple doctors before deciding on one. Question the doctor as to how many of these surgeries they have done. And, here’s another thing…it may seem a little out there or over the top, but in many states you can go online to the county clerk of courts site to check and see if there are any open or past cases that have been brought against a particular medical professional. Some states choose to keep that information off the internet, but you can check with your local clerk of courts office and they should be able to help you out. When asking your doctor how many of those surgeries they’ve performed, don’t take “plenty” as the answer!
**That was the response my husband received and it made him feel stupid. That’s just a way to manipulate someone into not asking any more questions and made me feel the doctor was hiding something. As a result, my husband felt uneasy, which in turn made me extremely uneasy. Which leads to my next point…
Number 2 – GO WITH YOUR GUT! If it doesn’t feel right, move on to the next doctor! Keep looking until you get peace about who will be cutting you open!
Number 3 – DO YOUR RESEARCH! What is the proper protocol for your particular surgery? Is it normal to get right up and walk around soon after or should you wait 24-48 hours? What are the signs of infection? What types of problems could arise and how do they typically deal with it when it happens? Asking these questions can better help you to advocate when you use their own words to remind them of the “plan”. Also, ask others who have had the same procedure or surgery what their experience was like. Maybe even ask a completely different doctor or someone you know who is a professional about their experience with this particular procedure. Again…you can’t effectively care for your person when you have no idea what you should be speaking up about or questioning.
**When they wheeled Clint to his room from recovery, the nurse asked him if he felt he could manage walking to his bed from his gurney. He was in so much pain but I could tell he wasn’t about ready to not do his best to try if the nurse thought he could handle it. Again, warning bells were going off in my head! “Should he be doing that after just having a colon resection done?”… I THOUGHT. But…I didn’t ask, because “doesn’t the nurse know best?” I found out after my husband had passed away from sepsis, that he should not have been up moving for a minimum of 24 hours according to the doctor I spoke with.
Number 4 – IF the person you’re advocating for is not able to speak up for themselves due to being medicated or pain levels, DO NOT LEAVE THEM ALONE!
**My husband was placed in a room shared with another patient. His blood pressure was going dangerously low (yet another symptom of sepsis). The nurse informed me that due to the HIPAA laws, I would not be allowed to spend the night in his room with him. But, here’s the thing…I was told that his pain meds were the reason his blood pressure was dropping dangerously low. They had given him a button to push as often as he needed as long as it was within the appropriate time frame. The nurse promised me that it was safe to go home because they were watching him. But I refused. I left his room and promised I’d come back in one hour to check on him. When I returned, his blood pressure was so low and he had been continuing to push the button. No one was stopping him. He had no way of knowing what his blood pressure was doing. All he knew was that his pain was off the charts. When I went out to talk to the nurse, he was watching tv. I informed him of the situation. What was the nurse’s response? “Well, he can’t push the button if his blood pressure drops below x number”. Really?? How exactly is he suppose to know that when no one is stopping him or paying any attention?? So, I let the nurse know that I would not be leaving his room. I was the one up all night after that, making sure my husband didn’t push the pain button unless his blood pressure was in a “safe” zone.
Number 5– Know the person well that you’re advocating for. What is their normal blood pressure? How do they typically respond to pain? What is their resting heart rate? What are they allergic to? You get the point.
**When the nurse came in to assess my husband’s pain, Clint told him he wasn’t even in the 1-10 range. He said he was in the 20’s. The nurse was completely unphased. I however was not okay with his response! Ummm”, I said, “no…you don’t seem to understand what he just said. He’s NEVER been in the 20’s for pain. Even when he had a micro tear in his colon, he never went above a 3!” The nurse seemed to scoff as he reminded me, “Mrs. Otto, your husband has just had major surgery”. Ok..yeah…sorry, I guess I forgot! Insert me slapping my forehead! “No!”, I snapped back, “he’s had other surgeries before and he’s never gone above a 3! I’m not comfortable with his vitals or his pain levels! This doesn’t feel right to me!” Which leads to my next point…
Number 6 – Have a back up person on the “outside” and don’t be afraid to use them! If you don’t have someone on the outside that you can begin getting advice from, go ahead and do the online research on your own. I know…they always tell you not to, so that you don’t “worry”.
**I didn’t look things up, mainly, because I can be a pleaser, a rule follower…I desire to do what’s right. I thought it was best to let them do their job. Oh, how I wish I hadn’t let them make me think I was wrong for trying to brainstorm what was happening to my sweet man. I might have recognized the early signs of sepsis and been better able to advocate. Less than 24 hours after his surgery, his surgeon informed me that it was “impossible” to have infection set in that early. Ha! And…I believed him…because I didn’t know any better. But…the surgeon agreed that an emergency surgery was needed to get in there and see what was going on. Seven hours after I was told he needed “emergency” surgery, they took him in. Those were 7 of the longest hours of my life, helplessly standing there watching him fight for his! After 7 hours of waiting for them to get him in for the “emergency” surgery they said he needed, I began to feel like our emergency hadn’t really been their emergency. When everything was done, the surgeon came out letting me know that…what do ya know…he had infection and “wouldn’t have made it much longer”, had they not gotten him in there when they did.
Number 7 – Here’s my final point. Sometimes, despite all our best efforts, the people we love don’t get to come back home with us. If you ever find yourself in that place, be prepared or ask someone to remind you, do NOT leave the hospital without requesting an autopsy!
**No one on the medical staff asked me if we wanted one. I think people near to us thought about it but felt uncomfortable amidst all the pain and sorrow to bring it up. I get it…it’s incredibly awkward! But once the shock settled a bit and I was able to start thinking about what had all gone wrong, it was too late! And here’s the cold, hard truth…once a person is gone, the medical staff legally have weeks to write anything they want about what transpired in the transcripts! In my opinion, this allows for ample time to discuss with the hospital and lawyers to make sure they have all their ducks in a row or to cover their tracks. Again, in my opinion m, no hospital wants a death on their hands…especially when it’s someone young and unexpected. In fact, when I first met with my lawyer, he informed me that they were already working to make sure they protected themselves from any lawsuit before I even attempted one (of course, he assured me that he believed they weren’t trying to be dishonest…just collaborating to make sure they had a good solid case if needed). Without an autopsy, anything can be said with no way of EVER proving it untrue. And, even if they are trying their hardest to provide accurate information, the longer they take to write, the fuzzier the details become. It will be next to impossible to ever try to protect the people coming behind you, that could be in danger. Not all professionals are created equal…choose wisely.
I know…you can hear the cynicism in my voice. I’ve put off writing this post for that very reason. In my opinion, we just didn’t get the best the medical field had to offer in that one experience. And…I believe with all my heart, all of the mistakes combined proved fatal.
This wasn’t always our experiences. In fact, I’ve had more “good” ones than “bad” ones. I know many wonderful people, both close friends and family, that are in the medical profession. They work hard, are intelligent, and care about the people they have taken an oath to protect. But, the thing is, none of us know when walking into a hospital if our nurses or doctors graduated with an A or D…passing is passing. We don’t know what kind of heart they truly have. Often, people are there because they genuinely care! Other times, the paycheck is all that matters. As a patient, you just don’t have the ability to know. So, ask the questions! Do your homework! Stand up for what you believe! Treat the caregivers with respect but listen to your gut and push to get direct answers.
“…and having done everything, to stand. STAND firm then…” ~ Ephesians 6:13, and leave the results to God! I don’t live in fear and would never want anyone else to be afraid either. We need to make as informed of decisions as we can but then walk confidently knowing we’ve done our best and sometimes even that does not produce the results we so desperately want. And, if you’ve had a similar experience that didn’t turn out well or resulted in losing your loved one, don’t beat yourself up! The “you” then didn’t know the things that the “you” now, may know. It’s okay. We are all on a journey and perfection is impossible.
I pray this helps someone!
All my best, Michelle