Look Out For Murphy
Murphy’s Law seems to be hanging over Bernie’s head like a black cloud, and if it wasn’t for bad news I wouldn’t have any.
Bernie’s Cranioplasty of September 22nd went about as lousy as it could. The best thing that happened was the fit of the prosthetic scull was perfect. Initially the surgery seemed to go as planned with Bernie only a few hours in the ICU after a couple of hours in recovery. The doctor said everything went well and Bernie should be able to go home in a couple of days. He couldn’t have been more wrong.
In the 5 days that followed Bernie went straight down hill. Recovery turned to survival. The 5th day after her surgery she could no longer move or waken. Even though the neuro person (pa), was making daily observations she was too stupid to see the decline. It was on that 5th day with the help of a nurse and one of the OT people we were able to attract enough attention to get a couple of neuro doctors to look at her. Bernie went immediately for a scan. It wasn’t too long after the scan that I was needed for a signature to approve an emergency surgery to remove the scull because of fluid pressure on the brain. My heart sank. How could this happen to my dear, sweet Bernadette.
The surgery was performed at 6 pm, the doctor came out at 9 pm to talk to our family. He told us it was fluid not blood. When I asked him what kind of fluid he said he wasn’t sure. I looked at him and asked if he sent any to the lab for diagnostics. He said no. I asked if it was CSF he said he didn’t think so. I asked “what do you know”. I was getting ticked by that time and my brother grabbed my arm and kind of reminded me to keep cool. I looked the doctor in the eye and told him that I was disappointed in the surgical results and I was also disappointed in him. He made no further comments.
As the days passed the follow up scans were ok, but Bernie was going seriously into respiratory distress. They even thought she might have a blood clot that moved to the lung. On October 4th Bernie was moved to the Medical ICU for treatment and observation. The respiratory distress required that Bernie be put on the ventilator. They did tests too numerous to mention. There were also indications she was bleeding somewhere, diagnosis was difficult because her existing kidney transplant wouldn’t allow the use of dye during scans. Her hemoglobin went from 8 to 6 overnight, 2 units of blood were given and the same thing happened the next night. In all, she received 6 units of blood in 8 days. She was also weaned off the vent for a couple of days , went back into distress and put back on the vent, then it was decided to do the tracheostomy in order to avoid any more stress to Bernie.
The blood issue was never really solved. Bernie has existing A-Typical Mylofibrosis which inhibits red cell production. That, along with emergency situation drug applications was implied as the probable cause of the rollercoaster hemoglobin numbers.
In closing this stage of the Saga, on October 20th my dear wife was transferred to a rehab hospital, unable to stand, walk, talk, eat, use the bathroom, or move any of her left side and very limited use of her right hand and arm, all of which she was doing before this set of surgeries. She also received a complimentary C-Diff infection. Bernie lays helpless with her neck in hyperextension and a tube in her throat. With the tube feeding she has gone to about 95 pounds.
Two days and you’ll be home, sure. I’m in the gutter.
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