Tara in the OR waiting room. Mom had an intestinal perforation (many people have had intestinal perforations) and one week and four days after her surgery a CT scan revealed that she had a new perforation higher up and so she was rushed into a second emergency surgery. The second one took an hour longer than the first one. Her surgeon told us he’s never had this happen in all his years of practice. He said he was “flummoxed”.
Flummoxed is not the word you want to hear a surgeon use.
You want surgeons to say things like “I’ve seen this a hundred times before and can predict the outcome with a certainty of 90%” or “This problem is so common I’m practically bored with it professionally”
The two and a half hours Tara and I waited in that 80’s revival room I think we both went through several cycles of emotions and thoughts.
I mostly thought we were going to lose her that night. It was the longest night.
Until the next longest night.
24 hours before her second emergency surgery, while the hospital was planning mom’s release to the skilled nursing facility to finish recovering before coming home, Max came to see her. We talked about going to see World War Z with Max when mom recovers later in the summer. Max made me take pictures of the hospital food charts on the meal carts.
I am having trouble with the re-play. The second surgery for the same thing that shouldn’t have happened but did. My mind insists that once something that’s never been seen before has been seen – the chances of it being seen again have risen by 50%.
My brother Zeke, Tara, and Zeke’s good friend Taylor in the ICU right after Tara and I watched mom’s surgical wound bandages changed. Something you don’t get over in a hurry.
From left to right: Orchids from mom’s best friend Bill, flowers from Tara, citrus fruits Tara brought because mom wanted to smell them because she can’t have any food and was craving citrus.
Today my mom needed a blood transfusion because she hasn’t been able to keep even liquid nourishment down for 15 days. She’s malnourished. That yellow bag isn’t urine, it’s liquid vitamins to support the blood transfusion. She’s also on such an intense antibiotic regimen that the hospitalist has taken advisement from the CDC about what level of antibiotics she’s going to need when she’s released to the skilled nursing home. She has a lung condition from getting pneumonia so many times in the past that she has permanent lung damage and a permanent cough to go with it so she has to have respiratory treatments to clear her chest every day. This is exacerbated by the fact that even the healthiest lungs slowly collapse and collect gunk during prolonged bouts of laying in hospital beds. The way to combat this, of course, is to get patients up and walking about. This is complicated by the fact that my mom came into the hospital with a compound back fracture. (The back people described her as having a “blown disc” but we’ve also heard “compound fracture” enough that I figure you can take your pick) So to walk around she has to wear this molded plastic armour that supports her back but also must account for her fragile abdomen wound which is incredibly painful. When you have such extensive injury that you spend most of your time in bed you need help with circulation so she’s got leg compression sleeves on her calves that squeeze her legs forcing blood back up into her heart to be recirculated. She also has had to have an NG tube off and on (she has a habit of tearing it out) to drain her stomach because both the first time around and the second time around when allowed to drink water and ingest liquid food her stomach has not processed them resulting in her stomach becoming distended and then she throws it up. Meanwhile her lips and her mouth are so dry all the time she’s begging for the water she can’t often have and needing constant replenishment from lip balm.
My mom basically feels like shit when she isn’t feeling incredible pain.
My sister and I are mildly obsessed with watching her white blood cell count and trying to discern whether the pain in her stomach is the same as when she was first admitted and then when she had the second perforation or if it’s just pain from her broken back and her enormous surgical incision.
Room 108
You don’t get to stay in room 108 unless you’re pretty special – my mom got there because of her constantly tearing out her tubes and trying to get out of bed which, in her condition, is extremely dangerous to her recovery. She’s shared the room with Sergei the Romancer who spent most of his time on the hospital phone when he wasn’t harassing the nurses for tea and favors, a guy who slept 15 hours due (we think) to an overdose of xanax, a gaunt lady who’s missing half a leg and whimpers a lot from pain and who loves to say “motherfuckers” when the nursing staff try to clean her up, and a homeless suicidal guy whose wife is hooked on heroine.
The level of trauma my mom’s body has gone through is phenomenal. She’s fighting for her life right now. Some moments she seems to be doing so great I can’t believe I’ve had such trouble shaking the feeling that I’m going to lose her. Then everything changes and my fears are well founded and the surgeon can’t emphasize enough what danger she’s in.
The morning she woke us up gasping in awful pain saying she needed an ambulance I had a bad feeling. When I was ten I didn’t know how I could protect her. I’m 43 years old now and I still don’t know how I can protect her. I had hoped that her living with us and being an intimate part of our everyday life would help me somehow keep her safe and healthy.
The stark reality of the past two weeks has humbled my pretensions.
My mother is one of those people who can’t help but shine. She’s got this light inside of her, an immutable charm, something you can’t invent for yourself but have to be born with. She’s an amazing artist and a complete original. All my life my friends have loved her and wished their own mothers were as cool as mine. It used to annoy me. Sometimes having a wild visionary spiritual hippy artist mother is less like having a mother than it is having your own personal college roommate.
During the darkest moments, through post-anesthesia delusional fogs, my mom has kept her wonderful sense of humor. When I bolted from the room when she started throwing up I heard her say behind me “Boy, I sure know how to clear a room!” She’s sweet to the nurses even though she has sometimes thought they were part of a complicated political plot to undermine everyone’s freedom in the hospital (we have been told over and over again how normal this reaction is to the pain meds). They love her. So many people love her because she’s such a funny, sweet, beautiful lady.
This afternoon she was wanting to get going with her physical therapy. She wanted to get shut into her Plastic Maiden so she could get up and walk around – something she knows is vital to her recovery. She was so positive even though yesterday she had such a rough day – pain meds weren’t working well and she was without any for several hours. Yet today she was rarin’ to go – to do whatever she can to get out of that joint. She has been so appreciative of everyone thinking good thoughts for her, so appreciative of her kids visiting her. She’s rascally and funny and I really want her to live.
Right now I am too numb to have either an abundance of hope or an abundance of fear. I honestly don’t know what to believe, to trust, to imagine. I only know what I want.
I want my mom to come back home with a lot of years left to enjoy her puppy and her kids and grandkid on her porch and have new adventures with her best friend.
There is such a cushion of love around you mom. We’re all bringing what we can to you.
I promise to hang Chinese paper lanterns across the porch and the back yard and to put out many bowls of “stuff” to celebrate when you are out of the woods and back home with us.
xoxo