April 31, 2025

What Next?

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.