Sandwiched Support

Tag: family

  • May 27, 2025

    Infection or Inflammation

    Mom was in the hospital for about a week following a seemingly successful initial surgery (the initial surgery of this journey). She proudly shared and continues to share with providers and anyone who will listen how she managed to get through 75 years of her life with only wisdom teeth surgery. Now she sported a vessel loop closure, something new that allowed the incision area to be pulled together gently and gradually and after about a week post-surgery (and my difficult first encounter with who was to be Mom’s next surgeon) she was deemed ready for discharge to her very first experience with a Skilled Nursing Facility for rehab. It was all of our first experience with a real nursing home for anyone in my parents’ generation. Most recently I visited two of my husband’s grandparents in nursing homes and quite frankly I had moved my parents in in part to avoid setting foot in the awkward sadness that I have experienced in many of those facilities.

    Unfortunately it quickly became clear that the staff at this first skilled nursing facility Mom was discharged to for rehab, did not appear to know how to care for her incision area as a whole, a process called “flossing” the vessel loops. The nurse practitioner who oversees the skilled nursing facility where Mom was admitted completely geeked out over the vessel loops saying he had not yet seen any and was very interested in getting to see what we assumed must be one of the latest ways to close a surgical incision in person.

    Fast forward approximately 4 days later, Mom was right back through the ED with a fever and full-on infection of her Mesentery. Infections are a natural risk of surgery I have been reminded ad-nauseum and also the “flossing” logs from that initial facility show that if the nursing assistants or nurses or anyone else on staff there were flossing the vessel loops as often as they were supposed to be flossed they were not documenting doing so. I suspect the reason for the lack of flossing was that probably literally no one trained them to do so. I wonder if they were even all told about it, especially since Mom arrived on a Thursday night and was out the door with an infection by Tuesday. Between Dad and I we visited every day while Mom was in the initial skilled nursing facility. I introduced myself to the charge nurse admitting her, to the nurse practitioner, to the OT (was thrilled to see her there Friday morning, a fellow school district mom and friend), to every nurse, to the Social worker, to the head of PT. We stayed close and made ourselves visible (which I recommend that you do), but there was still what I would refer to as a shortage in services particularly over the weekend.

    Thankful Mom got a bed there when she did at a facility rated with 3 Medicare Stars. The 4 star facilities and one 5 star would not or could not take her for various reasons which I will describe further in future posts. Keep at the forefront of your mind that if your loved one needs aftercare it is not always easy to come by and the fact that it’s complicated is a gross understatement, especially in the case of a medically complex situation.

    I am certainly not stating that the Mom’s first 4 days at a skilled nursing center or anything that happened there were to blame for the roaring infection she went back into ED with. Mom’s case is medically complex and the makings of an infection could have started during or soon after the surgery or during her week of recovery in the hospital and we will never know the cause for sure. However, what I am saying is that I strongly suspect that the surgical team who placed those vessel loops and then monitored Mom through discharge did not adequately make sure they communicated how to floss those vessel loops to the actual staff members that were going to be flossing them. Again, correlation does not mean causation, but what might be on your loved one’s discharge plan that is not being carried out by a third party caregiver correctly and could this be because of a lack of thorough communication?

    Hospital Hints:

    Maybe things are missed every day on discharge plans that are of no consequence, but I urge you as your loved one’s advocate to familiarize yourself with the discharge plan and how each direction is to be carried out and by whom and follow up to make sure things are being carried out as intended.

    Also, did you know that hospitals and physicians can be penalized and sometimes not paid by Medicare and other managed care companies if their patients end up with an infection or if they are readmitted for that or another reason? I am just learning this and know very little about it as of yet, but what I will tell you is that for one month a team of surgeons and their residents did not miss a beat repeatedly insisting that Mom’s diagnosis was “inflammation of the messentery” and Never Ever Ever Infection. Her admission paperwork in the ED says sepsis and she was being treated prophylactically with antibiotics as she had a fever and an elevated white count. For days, weeks, and ultimately over a month they could not get the infection under control and involved Infectious Disease who was treating my mom with multiple antibiotics, but as the family member when I asked if my mom had an infection, the surgical team always said “no inflammation.” Multiple surgical residents and surgical attending physicians at the small hospital said that for them to diagnose my mom with an infection they would have to open her back up surgically and take out a sample of the inflamed area and send it to pathology for a test to officially say she had an infection. From steroids or other autoinflammatory meds to muscle relaxers and GI medications, and even some pain meds they prescribed one thing after another to try to get my mom’s pain and other symptoms under control. But I will never forget how they looked me straight in the eye for a month and spoke to me by phone for a month and told me that my mom had inflammation, but no infection while she was being treated with antibiotics by Infectious Disease. It made me wonder how in the world I could trust anything else they said. I certainly tried and some providers and residents were more attentive than others as they attempted for weeks to find the right plan of care, but that ridiculous claim of inflammation felt so very false so just know that that’s something out there that you might encounter. Someone who works for that small hospital told me they get in trouble if they call it an infection. Someone else told me the protocols have something to do with preventing the overdiagnosis of infections or incorrect diagnoses of infections as it was something going on during Covid. But what I will remember forever is feeling so in the dark while surgeons I’d hoped to trust and their residents kept making statements that felt like gaslighting.

    Pro (amateur trying to become pro) Tip: Talk to many different people in the medical field who you know in your personal life (if you are blessed to know them) and ask lots of questions. Ask for their recommendations, ask for their point of view, and ask them which questions you should be asking the doctors, which ones they would ask if it was their loved one. If things get medically complex show your loved one’s scans to those who are trained to read them and continue to gather lists of questions to bring to the treatment team.

  • May 22, 2025

    Hospital Hint: Leave a Voicemail with questions for the RN Case Manager first thing in the morning if that individual appears to care

    I am trying to recall when I learned that Mom was not only assigned a social worker/case manager/aftercare planning extraordinaire, but also was assigned an RN Case Manager. I am deeply grateful that this position exists as it is a registered nurse (someone clinical who understands at least a significant amount of what’s going on medically) who participates in the medical team meetings regarding your loved one’s care. Get this person’s business card or jot down their phone number and extension ASAP. They are able to both send direct messages to the providers through a staff chat feature AND they sit in the treatment team meetings. If anyone is going to share your questions with the providers AND get an actual response, it seems it will be them. Our first RN Case Manager taught me that Mom did not have a Medical Team treating her, she had a Surgical Team treating her. She provided me with a number of correct terms in a supportive, respectful way.

    My understanding is that the bedside nurse, case workers, PT/OT, residents, and others have some access to the chat with the doctors, however the doctors (especially the surgeons) can be slow to respond. It is understandable that they are busy and the surgeons are often in surgery, but having a Nurse Practitioner or Physician’s Assistant on the team who can receive calls from family members and advocates is incredibly helpful and that option is not put into practice enough. During one lengthy hospital stay at the smaller hospital I did get a Nurse Practitioner who works with the surgeons to call me a time or two, but I don’t remember receiving helpful answers from those calls. The first RN Case Manager we had, however, communicated every question I had to the team and called me back with every answer she got. There was a time I was leaving her a message nearly daily for weeks with questions I came up with by tirelessly texting wonderful people I know who work in the medical field. That was my best access to a way to communicate my questions to the doctors during a time when solutions from them were far too few and getting calls directly from the surgical team were a near impossibility (I will describe exceptions to that as well as other solutions we came up with in another post). If you think you are going to ask an inpatient provider a question directly without quite a bit of effort, definitely manage your expectations about that (Tips on this another day).

    Unfortunately we were not assigned that original RN case manager with every readmission to the smaller hospital and the second one we had was more no-nonsense. She was courteous in asking to speak freely and I encouraged her to do so. Her recommendations surrounded accepting the readmits as the new normal and she described ways to learn how to stay home longer until things are extra emergent in hopes of making it to daytime hours and potentially seeking outpatient scans during daylight hours and maybe even a direct admission. She did not return calls very often and did not seem to want to pass on my questions as readily, attempting to talk me out of any suggestions I made about the surgeons being held accountable for finding a solution for my mom or directly referring her out. Also unfortunately during our most recent readmit to the smaller hospital, our original Case Management RN was back on Mom’s team, but she was colder and less involved (it seems there are penalties for readmits and after a while the hospital shows you they want to be rid of you, even if they have not resolved your loved one’s problem).

    Also less than ideal, at the larger hospital I was not given the phone number for the RN whose title I believe was Care Coordinator. The bedside nurse who went over Mom’s discharge instructions said he stands in the back, but rounds with the treatment team. Interestingly enough, it seems he may have been in charge of our botched home health admission most recently and never reached out to our family at all. At the larger hospital there was no EDD until day of and I was asked to come get my mom. The smaller hospital gave much better notice. Wondering how the larger hospital would have handled it if I said to them I could not come that day or that I had one brief conversation with the social worker and none with the RN Care Coordinator and was never given any advanced notice that the discharge was going to be that Monday.

    Just know that these are things that happen and that overall you are your loved one’s advocate. If you are fortunate enough you can receive help from some of the hospital staff, but it seems to be the exception quite often rather than the rule. But if you are seeking a line of communication beyond calling the bedside nurse (who will often help, but who is also often very busy with other patients), try the RN Case Manager with your medical questions as they can both put the questions in the chat to the doctors (so can the bedside nurse), but they can also communicate your questions and concerns at the treatment team meeting they attend. Leaving voicemails for them is one solid way to go as you cannot leave a voicemail for the doctors.