In 1959, my mom was born. On August 21, 2010, my mom passed away. My blog is the closest thing I have to a journal and I need to get this out for me, more than I need anyone to read it.
Mom had high blood pressure and headaches for much of her life and nearly a year ago exactly, one doctor decided to look deeper than the “stress, sinuses, tension” diagnoses she’d gotten in the past. An MRA revealed 3 different aneurysms. Her doctors response upon getting that test result was a 10pm call to my mom saying she needed to go to the ER. She did and my younger brother called and told me what was going on. My mom lived about 3 hours north of me if I drove normally. It took me about 2 hours to get there that night. The ER trip that night turned out not to be necessary but I wanted to be there with my mom regardless.
What followed was a succession of doctor visits and tests. An angiogram was done to reveal the size of the aneurysms (2 quite large, one “manageable”) and several doctors were consulted about the course of treatment. There was talk of her going to Buffalo in January of 2010 to have surgery for the aneurysms but the day discussed came and went and mom was still hanging out at home and working.
Early in 2010 (I can’t remember the exact month), my mom told me they’d finally scheduled the surgery, 3 days after my 30th birthday. Instead of going to Buffalo, she was having the surgery in San Francisco. The surgeon was supposed to be one of the best in the country. He was very confident about everything and this helped my dad and I feel comfortable about the surgery. Mom didn’t want to hear about it, didn’t want to talk about it. I found out later that she was taking anxiety meds to help deal with it all.
I arranged for my younger brother to fly down from Alaska and for my younger-ish sister to fly over from the East Coast. We engineered a successful surprise during what was technically my birthday weekend but really, the weekend was all about making sure she was feeling the love from all of us. She had to be at the hospital at 6am for her surgery so we all (well us minus the fiance who had to go back early for work) got in the Durango at 3am and headed down to SF.
After some paperwork and waiting around, her surgery got underway at around 7:30am. The surgery went on until about 6:00pm. To say we were tense and anxious was an understatement. She made it through the surgery, though there were some complications. We could never get a straight answer from the surgeon on why the surgery took 12 hours vs. the 8 hours we expected, nor did we get an answer as to why he deviated from the original surgical plan. All we knew was that instead of her aneurysm being coiled, it was clipped. The clipping caused some unexpected clotting that, to quote the surgeon, “blocked a small but important artery.” We’ll call that the understatement of the year.
Due to the blockage, Mom lost movement on her entire right side and had serious expressive aphasia. What was supposed to be a week long stay in the hospital followed by 6 weeks of rest at home turned into a week in the ICU and a week in recovery in the hospital. During much of the time in the ICU, Mom was in and out of consciousness and she battled hard to get from only saying “mmm hmm” and “uh uh” to being able to communicate with those of us around her. The expressive aphasia was frustrating to her to say the least. The lack of right side movement was beyond trying. Mom was a very do it herself kind of person and never really enjoyed being still for too long. Several times she tried to get up to do things on her own and I had to rush out to get a nurse to help. This was no surprise to me but I want to take this opportunity to take a small detour down the road of nursing.
Moms ICU nurses were top notch. Seriously, they moved like a well oiled machine and there were zero concerns from me aside from typical worried daughter “is she comfortable?” kind of things. Once she moved out of the ICU, things got concerning. Moms surgery was a multistage surgery that required an 8 inch incision on her left forearm, a 6 incision on her neck, and a large incision on her head. Due to all the meds and fluids she needed, a PICC line was put into her right arm. Due to the increased swelling and fluid in her head, they put in a drain on the side of her head opposite her incision. She definitely needed a lot of special attention. She didn’t get that unfortunately, and I had to point out specific instructions to the rotating parade of nurses several times. At one point, she developed serious pain in her right shoulder, enough that even having her sit up caused her great distress. Nurses response? We’ll get you some more pain meds. It took everything in me not to go off my hinges a little bit at this. Maybe its the troubleshooting computer tech in me that thinks you should find the root cause of a problem instead of band-aiding the symptoms. I digress…
Once the hospital deemed she was ok to move to a rehab facility, things were starting to look up but she was very upset that she wasn’t being taken home. She did not want to be in the rehab facility at all. I guess that should have been a sign. The nurses there were…a different breed? They were under the impression my mom was recovering from a stroke. I think the large cut on her head should have given away the fallacy of that. They didn’t know what she was supposed to do to eat or use the bathroom (in fact, one of them asked me and Steve on our first visit there).
On the night my mom passed away, Steve and I came up to visit after work like we normally did. Steve would always meet me at work and we’d take one of the cars up to the city together so we could ride in the HOV and have a slightly less traffic jammed ride up to the city. We got to the rehab facility and dad told me that when he got there, they’d taken her blood pressure on top of her PICC line. Everything ever written about a PICC line says you are NEVER supposed to put a blood pressure cuff over a PICC line and if you must take blood pressure from the same arm a PICC line is in, you do it from the forearm. Obviously when I heard that, I was livid, given that there was a sign over her bed saying exactly what not to do when a patient has a PICC. More digression.
Mom seemed fine that Friday evening and Steve and I told her goodnight and that we’d come back Sunday. Saturday was a wedding prep day. We left and Steve picked up his car from my job while I stayed at work to make use of my large monitors to work on some of the graphics work for our wedding invitations. Dad called me at about 10pm or so and told me that mom had taken a turn for the worse. I immediately called Steve and he came right back and back up to SF we went.
When we got to the hospital, Dad told me that mom complained of pain in her head and they took her down to get a CAT scan. While she was getting the CAT scan, something in her brain was bleeding and by the time they’d finished the CAT scan, she’d lost all neural activity. When I was allowed to see her, she was hooked up to some machines that kept her breathing but for all intents and purposes, my mom was gone.
I broke down. I never break down but I most certainly did that night. Panic, shock, etc etc. I called my brother who knew something was up but was not expecting to get THAT call. He was in denial. Shock. Etc. I called my sister and my other brother and my aunts and that was about all I could take. We helped Dad take his suitcase and moms suitcases out to the Durango and he went back home and we went home.
I cried a lot. I didn’t think it was fair. I still don’t. I want to make inquiries to see what went wrong at the rehab facility because once she was there, she was supposed to be out of the woods. I want to know why a brain surgery patient was allowed to bleed out during a CAT scan. Those inquiries will happen after the wedding, I just can focus the mental energy on them now.
I wonder what the surgeon thinks about my moms passing. I wonder if he feels like someone else messed up his work. I wonder if he got angry when he found out. By the way, don’t let Grey’s Anatomy fool you, neurosurgeons are not all like McDreamy. This one definitely was not. Bedside manner is maybe a skill he could work on.
It’s been a month since my mom died and I cry all the time, for no reason. Well, there is a reason, obviously, that I miss my mom. I wish I could have her back. I wish she could be at my wedding. I wish that she never had to go through any of what she went through and could still be here, healthy, enjoying life. She was always worried she’d die at an early age. Her mom died at 37. Her mom’s mom died at 41. So now, that has become my worry also. Aneurysms are hereditary and I’ve been having weird, random, icepick headaches a lot lately. I have a doctors appointment for them tomorrow. I am hoping I don’t get a 10pm call with unwelcome test results.
I’m trying to let you rest in peace Mommy. I miss you.