Shout out to an amazing neighbor who has been the MVP at texting me more often than anyone else to ask how Mom is doing, how her pain is, and what the updates are regarding her care. She is a retired physician herself and has answered many of my questions. She has been very responsive and very encouraging. And there are certainly others who have been incredibly empathetic and responsive as well.
It’s a shame that the medical team has not called me once post “end of surgery debriefing.” I had them write my name on Mom’s white board and just like in the small hospital I can’t seem to get through to anyone in the big hospital when I call and when they told me they would put me through to he bedside nurse. They put me through to a voicemail. I never got a call back. And I am admittedly weary and burned out. I have been advocating THIS time around on this medical issue for Mom for 11 months now. Hospital systems and their staff, in my growing experience, are NOT supportive of the patient’s support system. If it’s not a liability concern it appears that they do not care.
And Mom said this morning the attending surgeon did not come in to check on her. Rather two residents came in very briefly and asked how she was doing. She says she is feeling so-so as she has been telling them everyday. She also tells them the NG tube hurts and they simply said “it’s going to be there a while.” This was upsetting for her as the attending told her they were going to leave the NG tube in for another day and his statement implied that there might be a change after that/.
I am an hour away with 4 kids, plenty of work for my two part-time jobs and trying to live apart from spending my life at the hospital. It’s hard to get there. But it appears that I have to be the squeaky wheel to receive bare minimum reasonable communication and updates. It’s ridiculous that Mom has been BACK in the hospital for 5 days now and not once have they given me an update. I only got one in the ED because Mom put me on speakerphone while the provider was in the room. I tried calling the ED multiple times and no one ever answered.
Responsiveness to a patient’s people and empathy are in short supply in the inpatient system.
Repeat after me, they are not responsible for lost or stolen items.
It’s another first world problem for sure, but my elderly parents become quite testy when the items that they liked and that they spent hard earned money on disappear. We try to be careful and take only the bare minimum of what we need to hospitals and other care facilities, but the saga continues with the things Mom has loved and lost.
And before I go on with the stories I will just say that as a working sandwiched only-child advocate for my mom and just having Dad, who is aging and has many of his own medical issues, and some peripheral help from family and friends, I just plain CANNOT be there with Mom and her things all the time EVEN during every admission, discharge, or transition. I have tried when she was being treated repeatedly at the small hospital which was 10-15 minutes from our home depending on traffic and lights. But now that she made a move to the big hospital just under an hour away, I absolutely have to rely even more on transport teams and facility staff members and sometimes I regret that that is the case.
I believe the first incident was a nice charging cord being left in an ED room by a staff member who was pushing Mom’s gurney to her room upstairs in the small hospital during one of many re-admissions. I know I told a staff member about it before I left but it was the middle of the night in the ED and Mom insists that she told the person transporting her to bring it along but that was a time when heavy pain meds were on board so we are not sure what was communicated but the charger never made it to the next destination. Dad filed paperwork and they said they would cover the cost. I insisted that he follow through with that and I honestly don’t know if the small hospital ever reimbursed us for it but when you’re sandwiched some things just must fall off the list.
The second items that disappeared were in an Acute rehab facility over the holidays. Mom had some white blankets from home with her bedding as she is always extra cold and our first mistake beyond bringing the personal blankets to a rehab facility in general was that they were white. When they change those beds every bed linen (ALL of them white) gets scooped up in a heap and hauled away to a laundry company who services several of the facilities. From the moment Dad reported the personal blankets missing they were long gone mixed into oblivion in a sea of white everything and could have been shipped back out to any one of the services facilities. Dad repeatedly asked for them to reimburse him for the cost of those brand name blankets and they showed him the form I had previously and quickly signed upon admission that said they are not responsible for personal belongings.
Most recently, in the last week, Mom was discharged from the big hospital to their very nice Acute Rehab facility nearby and transportation on a weekend night on Labor Day weekend when I had taken the opportunity to go a few hours away to the shore with my husband and children and I was grateful for that transport team and the ambulance that took Mom to Rehab and the one that had to bring her back less than 24 hours later to the ED. I need to get Mom’s clarification on when the items were lost but one of the transport teams never brought in an arrangement of flowers from my aunt that traveled with Mom nor a pack of her personal briefs in which she chose to pack another cell phone charging cord and her favorite glasses case, all of which have now grown legs and run off on us. She had staff call the ambulance company but no one knows a thing.
Just thankful that the glasses she needs weren’t in the glasses case. We always hope whoever has the items truly needed them more.
The big hospital surgeon who performed Mom’s most recently surgery one week and one day ago came in and checked on her today and said he thinks this is all because she didn’t eat solids for so many months (following his orders to prevent another obstruction while awaiting surgery). Hope this informs them for the next person if it happens again. They won’t come out and say that they tried solid foods too soon. I mean I am not looking to place blame at all and I’m not angry. I just wish they would admit they should have waited a little longer before introducing the solids because if there ever is a next surgery (hopefully there won’t need to be but after almost a year of this I am always preparing for the next Q & A session with a doc) I want to be able to say that slowing down the reintroduction of even soft solid food in my mom’s seemingly special case should be considered to avoid setbacks. The NG tube is apparently STILL getting stuff out of Mom’s stomach and they have more than once told her that they are surprised that it is still emptying contents since it went in Saturday night. No EDD as of yet and we are left to wonder did they urge her Too Soon to consume solid food post surgery given her medical history in the last year of prior ileuses and previous obstructions and bowel nightmares. Can we ease our way gradually in recovery with the patients like Mom who tend to have setbacks? What’s the hurry? Readmissions are certainly not what anyone wants to see.
So I am realizing more and more each day how much Mom is getting older and how she may or may not remember exactly what she was told by the docs while she is on meds and sleep deprived. It appears it is not an obstruction, thankfully!! But it is quite the Ileus situation. The doc who admittedly thought she was ready for discharge on Friday after merely passing gas stated that she too was disappointed to see that the usual protocol did not go smoothly with Mom post surgery.
So Ileus, I understand to mean, is quite the slowing down of digestion in the intestines and it can be normal after surgery. So we are very thankful to hear that Mom’s surgery may have been a success and we certainly will take a longer recovery if that’s what’s necessary after a successful surgery with long-term improvements (Mom may be saying “speak for yourself” as a large NG tube is STILL days later emptying the contents of her stomach because soft solid foods seemed to have been introduced faster than her body was ready to tolerate them).
She was thrilled that I texted beach pics to her today and my youngest read a page of a popular chapter book to her over FaceTime. My aunt and Dad visited today and there is a lot of hanging in here and waiting for next steps.
Her body let us know it was not time for food yet and it was not yet time for discharge. Hoping she ultimately recovers more smoothly this time and that she comes home at just the right time for her body to be ready for that.
My husband and children and I are away on a short trip and I am on a balcony with a moderately distant, but beautiful view of the bay. Below and to my left there’s also a back alley loading dock area full of trash cans, pallets, and plastic crates belonging to an upscale restaurant in the area where the employees sit on the dirty concrete stairs smoking one by one and staring off into the distance. This little condo is full of hopes, dreams, and little efforts to fix it up, but it and its complex remains dated and there’s plenty of evidence that it is not yet fully renovated. The price was right after our primary budget went to the trip out west.
I am allowing myself to just write once here per weekend. I haven’t written a Sunday morning post yet, but I figure anytime between Friday evening and before my weekday posts start again on Monday works.
I am struggling to accept all that might be coming next. Mom did in fact pass gas post surgery but did not meet goals from there. Her recovery was on track on Thursday with the aforementioned goal met and my family took the opportunity to seek the beach as an end of summer treat before sports are in full swing and while Mom was in seemingly great hands.
Somehow our setbacks with her medical status have often reared their ugly heads during holidays of all kinds. No sooner were we celebrating a shift in cautious optimism to a stronger hope that the surgery at the big hospital with the competent teaching surgeon fixed the problem, then Mom was starting to say she had pain again, though it felt somewhat different than before.
I spoke to the caseworker twice by phone about the plan to send Mom to an Acute rehab facility associated with the big hospital just down the road. The big hospital system was able to transport directly which was extremely helpful because Dad was visiting his brother who is in a long-term care facility out of town and my aunt (Mom’s only sibling) was dog sitting and on call to go pick up Mom and drive her wherever if she became ready for discharge, if the hospital system would not transport her, and if transport had to happen before Dad was available again late Friday.
Mom called Friday afternoon while I was on the beach saying that she was starting to have abdominal pain again and we were talking about whether they should have encouraged her to eat quite this quickly post surgery and post passing gas given her history of various issues (post initial emergent surgery in October 2024 at the small hospital). From Monday evening’s surgery things were going ok, though gradual, and she was having expected post-surgery pain. However, then they introduced soft foods without even being on just liquids post gas-pass for 24 hours. Mom and I and others questioned this and I still wonder why we cannot take baby steps with a medically complex situation like Mom’s. Passing gas Thursday morning, maybe we wait until at least Friday morning to move beyond liquids. Doesn’t seem unreasonable to me. But I suppose “protocol” whatever that means, encourages the food ASAP model. Or very likely it’s a managed care issue. Or even more likely a combination of issues.
I am sitting here dumbfounded that we are back here again. The caseworker got Mom into an Acute rehab where there are thankfully medical doctors because Mom wanted to come home if she was not going to go there because she did not want to be back in a Skilled Nursing Facility for rehab for a number of reasons.
Fast forward to yesterday I am very very grateful that they transported her to their acute rehab facility and that their docs, I believe, monitored her as her pain started right before she was taken to the rehab on Friday evening and worsened while she was there all of Friday night and into Saturday. And by last evening they transported her back directly to the ED of the big hospital where she had surgery Monday because nothing helped the pain or constipation situation and she was vomiting repeatedly at that point. And last evening over a puzzle with my 9 year old I got the news that Mom was back in the ED with level 10 pain, nausea and vomiting, and that she had been given all kinds of things at the rehab to help her pass her first bowel movement post surgery and all she got out was one very small hard part of a stool and nothing else and the pain and of course quite a bit of anxiety at this point once again continued.
I spoke with her on the phone a number of times last night and to the ED doc examining her by speaker phone on Mom’s cell phone. All I got is that they will do a CT with contrast. This is what I know to be a standard first step based on experience with Mom, but she had to drink the contrast while nauseous. Thank goodness for Zofran but that didn’t even completely do the trick. I fell asleep last night knowing she drank the contrast and that CT was to be around 11:30 PM.
I woke up at 5:45 AM needing to use the restroom and did so while reading Mom’s texts from 4:30 AM. She shared that she has another small bowel blockage (we were so sure and the latest surgeon seemed so sure that the problem area was resected on Monday but now that we’ve introduced some food back in we have the same or similar blockage problem again). She shared that she had a size 16 tube placed in her nose to avoid pneumonia and she said they told her it was needed to get all of the contents all of her stomach which is SO disheartening because she is texting me how uncomfortable it is and we have spent a lot of time during ED visits at the small hospital advocating for a child-size tube for Mom because her nose is small inside and she is a “hard stick” both when it comes to NG tubes and finding a suitable vein for an IV as well.
Waiting for the shift change to fully occur on this holiday weekend before I reach out for an update. Mom is not answering texts right now and I hope she is sleeping.
She meant so very well. She has always been warm as can be to my family and I and she is a compassionate, caring, mom and retired nurse. But today, after I sent a text update on my mom that included a family member on my dad’s side, she concluded a text of encouraging responses with “glad you can be with her.”
I hearted the whole text because I appreciate her love and encouragement, but here’s the thing, I’m not with Mom. And this brought up a little guilt I had to briefly work through today because, as planned ahead of time, my husband and I are away on a long weekend trip. We got the trip insurance in case something did not go smoothly with the surgery or the weather or a number of other factors. But we made arrangements for another family member to visit Mom today and to take care for our dog while Dad is also out of town for one night. And we hit the road knowing Mom is recovering and well cared for.
I was there for 9 plus hours the day of the surgery and the big hospital is almost an hour away. And I am not writing this because I think my family member would judge if she knew I wasn’t with Mom today, but instead because of the feelings it brought up in me. I have spent an unbelievable number of hours at appointments and in the ED and visiting at the hospital and with in-home care team members and ordering and picking up supplies and helping to provide care.
If you are an advocate or a caregiver, take note. Sometimes when our loved one is stable, recovering, and under the care of others (with or without loved ones visiting) it is helpful for us to focus on our kids and ourselves and to seize the opportunity to be away from where ongoing support may be needed in the future.
She meant so very well. She has always been warm as can be to my family and I and she is a compassionate, caring, mom and retired nurse. But today, after I sent a text update on my mom that included a family member on my dad’s side, she concluded a text of encouraging responses with “glad you can be with her.”
I hearted the whole text because I appreciate her love and encouragement, but here’s the thing, I’m not with Mom. And this brought up a little guilt I had to briefly work through today because, as planned ahead of time, my husband and I are away on a long weekend trip. We got the trip insurance in case something did not go smoothly with the surgery or the weather or a number of other factors. But we made arrangements for another family member to visit Mom today and to take care for our dog while Dad is also out of town for one night. And we hit the road knowing Mom is recovering and well cared for.
I was there for 9 plus hours the day of the surgery and the big hospital is almost an hour away. And I am not writing this because I think my family member would judge if she knew I wasn’t with Mom today, but instead because of the feelings it brought up in me. I have spent an unbelievable number of hours at appointments and in the ED and visiting at the hospital and with in-home care team members and ordering and picking up supplies and helping to provide care.
If you are an advocate or a caregiver, take note. Sometimes when our loved one is stable, recovering, and under the care of others (with or without loved ones visiting) it is helpful for us to focus on our kids and ourselves and to seize the opportunity to be away from where ongoing support may be needed in the future.
I’m sure there are plenty of thoughts from the point of view of the medical professionals on this and most certainly I do realize that they are at work when this is all happening and have plenty to think about regarding the patient.
However, following my family member’s surgery, I want to feel welcome for a brief visit in her hospital room. Mom’s most recent surgeon (phenomenal in so many ways: Knowledge, Skills, Ability to Communicate, and Bedside Manner toward both the patient and the family members) spoke to me around 6 PM last evening. After 7 PM I asked for her room number because I live just under an hour away from the big hospital and I was ready to go home after seeing her. I approached the front desk staff member in the surgical waiting room and she looked up the room number for me and called the unit ahead. They shared that it’s a shift change and encouraged me not to come until 7:30 PM which I did and I was still alone in a dark hospital room when I arrived because Mom wasn’t there yet.
Two nurses in the hallway were busy and ifnired me until I approached them. There was no or ask the desk and I asked if I could go to Mon’s room and the one nurse kindly and easily waved me on.
But when my mom arrived in her room, the gentleman transporting her by pushing her gurney did not make eye contact with me or speak to me. Worse yet the bedside nurse came in and began acting like I was not even there. The transfer to her hospital bed went smoothly but neither would look at me until I thanked them several times over and then politely explained that I would not be staying long. I also, in an easy-going way apologized when I got in her way and showed her the four items I was leaving behind for Mom. She was pleasant enough and answered me.
But I wanted to be greeted. I wanted the staff to introduce themselves to me and to make me feel welcome. It wasn’t the ED at 4 AM or something like that, it was the start of a shift, and even if it was it would go a long way to greet and welcome the loved ones of people who had surgery.
Mom’s surgery is today. It’s going on now. It’s been a long day as her arrival to the big hospital was scheduled for 11:15 AM and she was prepped and ready before 1:00 PM but another procedure with another surgeon ran overtime in the OR she was to be going into. She just went into the OR just before 3:15 PM. Her surgeon and anesthesiologist seem very competent and we are hopeful! But the procedure is extensive and risky and I have been texting, calling, and posting on social media because I am on my own here, waiting, and technology allows me to receive support from friends and family from a distance
I am to receive updates approximately every 2 hours. The surgeon shared that he scheduled her this way as he is already here all night so there is no rush and the procedure could take 1 hour or 6 hours. We knew it was going to be complicated going into it.
They called the surgical waiting room about an hour and a half into her entering the operating room so that the staff member at the desk could let me know that they had just then started surgery now, but that it took anesthesia a while to place her lines (IV and some other things they discussed with us ahead of time) so it will likely be quite a while yet.
I have so much support from a distance yet I am sitting here alone just like I did right after COVID in the county where I grew up while my Dad had a quadruple bypass surgery. He is doing very well physically now about (I think) 5 years later or so. I’m an only child and most of my close friends have as many or more kids than I do and they have been working all day or caring for kids all day or both. They are running kids to activities because it’s a Monday night at the start is the school year and making dinner and some will soon start the bedtime routine for their young ones. Would be tough to ask one of them to accompany me even though I know they wish they could be here.
We have been marathoning hosting celebrations for three of our kids’ summer birthdays and hosted a celebration for a faith-based milestone for our youngest just yesterday. We have very little margin in which to plan and we didn’t know how the day would go so we agreed that Dad would get the kids off the bus like he always does and save his energy for visiting Mom tomorrow and Wednesday while I am working. And my husband worked all day and is running the kids to activities so that didn’t plan for him to be here, but now I wish he was.
Great news in the middle of writing this (an hour ago) Mom’s surgeon walked into the waiting room much sooner than I expected and shared how the procedure went better than expected and that many things we were concerned might happen did not occur and all of this is amazing news!! It took them longer to get the lines in her this time (a number of factors are making her a tough stick at the moment) than the surgery took.
And my cousin who works here came and gave me a hug a half hour ago as she headed in for her night shift. So I have much to be thankful for as I wrap up this post!
I will say though that the waiting was lonely and difficult and I will be asking and trying to arrange someone to wait with me whenever there is a next time. Once Mom is cleared by this surgeon she will pursue knee replacement surgery next. Hopefully that will not be as nerve wracking.
My aunt, Mom’s only sibling, started a fun tradition with my two older cousins of a first day of school treasure hunt where they followed clues around the house or yard after school on the first day to end up finding a prize or gift. When I headed to kindergarten and beyond, Mom set up those treasure hunts for me at the end of every first day of school with poetic clues.
I carry the tradition on with my kids and though I am running behind this year with a lot going on, I’ve written the clues and we plan to do the hunts over the weekend. It’s something the kids love to do and I hope they will share it with their children one day.
Sandwiched Support 