Saturday has been another day of problem situations one after another:
Early this morning Linda's heart rate went up to 181 beats per minute, with a concomitant increase in her systolic blood pressure to over 200. No one can explain why. By the time they got here with the EKG machine her rate was back down to the "sinus tach" level. The doctors prescribed metroprolol 12.5 mg BID to keep her blood pressure down. This in a patient who had blood pressures in the 90/50 range before her transplant.
Her left arm is more swollen today than before, and the back of her left hand is exquisitely tender and hot to the touch. They have elevated her left hand on two pillows. Linda also winces now, every time a doctor or nurse touches her chest with a stethoscope. Her temperature is 99.8, but she is on Norco 5/325 which has Tylenol in it so the absence of fever does not mean there is not infection. A new antibiotic called Meropenem - an anti-MRSA drug - has been added to her Vancomycin. No explanation from the doctors as to why this is being done.
Linda's first dose of the IV Meropenem arrived about 1:30 p.m. At 1:45 pm there was another puddle on the floor of the room beneath the IV pole and I noticed the solution was running out of the vent in the tubing above the IV pump channel and dripping down onto the floor. The nurse had to order another dose from the pharmacy. This is the second time this month a nurse has messed up an IV medication intended for Linda.
At 2:00 they ordered an ultrasound study for Linda's left arm to see if there is a clot which would explain the swelling, tenderness, hot area on the back of her hand, and beginning of breakdown of the skin on the back of her hand. It's 3:30 and no one has appeared yet to do the study.
The nurses are afraid to answer my questions about why the doctors have made these changes in Linda's treatment plan, and the doctors are not here to answer my questions. Once again, the "weekend stonewall" is on, and I'm not going to be able to find out what is going on until medical records shows up for work at 9:00 a.m. Monday. Bummer. I used to believe "informed consent" meant the doctors would discuss their recommendations with patient and family before putting them into effect. I guess the physician community on TICU here at I U Hospital has a different understanding of what "informed consent" means. I keep reminding these doctors about the AMA ads running on network television right now encouraging patients to ask questions of doctors until the patient fully understands what the doctor is proposing by way of treatment. These doctors just laugh derisively and say the AMA is not a "real" or "meaningful" contributor to the patient care conversation.
All Linda's liver doctors want to talk to me about any more is how soon I'm going to arrange for her transfer to an LTACH facility for weaning off the ventilator - in other words, when are we going to get out of here and leave them alone. They refuse to acknowledge that, having transplanted a new liver into her, they are obliged to care for her themselves for the rest of her life. They are fully prepared to dump us onto another institution - any other institution - just because they are tired of my questions and my complaints to the Joint Commission.
Meanwhile, the metroprolol, or the Meropenem, or both, are making Linda drowsier and less responsive than she has been in a couple weeks. Yet another reversal in her condition brought about by the infection - probably MRSA - she acquired here in the hospital. I would scream, except they would put me out and there would be no one at all here to protect Linda from their mistakes. So, I remain calmly watchful and constantly questioning about everything that happens.
I have sent the compilation of earlier e-mails to a number of plaintiff malpractice lawyers here in Indianapolis, to see which ones may be interested in representing us. Meanwhile, I'm scheduled to go to the studios of WTHR TV 13, the Indianapolis NBC affiliate, at 3 pm Monday for an on camera interview with Anne Marie Tiernon, Eyewitness News Health beat reporter and also anchor of the 5:30 pm and 6:00 pm evening newscasts. I expect the interview to air on one or both of these shows Monday afternoon. For those of you outside the Indianapolis viewing area, the internet link is:
I don't know what else to say, so I'm signing off for this afternoon.
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