We ended up sleeping for a precious few minutes Wednesday night, because the nurses, techs and doctors were in at regular intervals all night to have her sign consents, explain to her what was going to happen next, draw blood for labs, and other things in preparation for surgery. The surgery was scheduled to start at 11am Thursday September 16. The closer we got to 11 the more nervous we all got. Robbi got a little medication for anxiety. She felt nauseous, and it was probably just her nerves, because I think all of us felt a little nauseous, along with her.. This is the most time consuming and major abdominal surgery there is, and the consolation is that we are in a world renowned hospital and have exc'ellent surgeons and staff.
Robbis surgeon came in to see her and tell her that he was there, was headed back to the transplant OR area to get ready for everything, and informed her the donor liver was removed already. Robbi's surgery was scheduled for 11:00am.
Then things got a little twisted right about 11:10am. A man on the 8th floor, right above the floor we were on, shot a doctor because he was upset that after his mothers surgery she was left paralyzed. The nurse that was taking care of Robbi poked her head in the door said the whole hospital was on shut-down, a man had barracaded himself and his mother in their room (while the doctor, who was found laying shot in the hallway laying on the floor, was rushed into the OR,) and he still had a gun. The area surrounding the room he was in was evacuated and the police, SWAT teams and all security had the whole place locked down, all elevators were under guard, no staff was allowed in the hallways except staff. We hadn't heard any gunshots, or even knew anything was going on. The nurse told us to turn on CNN. We got CNN on TV and watched it all unfold both on the TV and out the window. On and on it went while all our friends and family wildly called, e-mailed and texted us about the situation since they knew Robbi was here and due to be in surgery. Meanwhile, we are worrying the donor liver is out and times a-wastin' on Robbi's new liver.
The OR calls the floor and says Robbi needs to get down there. Finally, Hospital Administration had to give special permission for Robbi to be moved from her room on the Transplant Unit to the OR, (same floor as the Transplant unit)while about the same time we hear the man has shot his mother to death and then committed suicide. We were allowed to get to the OR, and the chaos and drama died down from the events that had unfolded on 8th floor. We all walked down with Robbi as Mike pushed her in a wheelchair. The good-byes were bittersweet and while we all overjoyed "this was it", finally!- it was impossible to forget what a serious surgery this was and also be almost overcome with worry. Robbi was practically giddy with excitement!
The long wait started for us, and the new beginning started for Robbi a few minutes after 2pm Thursday.
We went to the OR waiting room and got updates every 2 hours from the OR about how she was doing. They had told us the first 1.5 hours or so are spent putting her to sleep, and inserting her Central line, IJ lines, foley, all those IV's in her arms including the arterial lines,
and preparing her for the surgery to begin.
After two hours we got a call to our cell phones that they were making the first incision and the surgery had begun. The next update was 2 hours later to say she was doing well. Then another one, she was doing well and the old liver was "out". New liver going in. Then a call that she was out of surgery and the surgeon would be out to talk to us after she was delivered to ICU. A little before 2am he came in and talked to us, told us everything had gone very well, there were no "surprises or curve balls", she only needed 6 units of blood during the whole surgery. He said he expected her to have a good recovery. He also said 30% of liver transplant patients end up having to be taken back to the OR due to bleeding after the transplant, so if that happened for us to not be alarmed or freaked out. Then he said we could go see her as soon as the nurses had her cleaned up and "tucked in". Finally, after 2am Friday, we were told she was in her ICU room and we could all go back. Raven and I went first.
She was very bloated from all the fluids they had given her during the 9+hour surgery. We had a brief but good visit with her and were surprised she knew we were there and while she couldn't talk to us and could only flutter her eyes open a bit, she squeezed her hands and signed "I love you" to all of us. Back to the waiting room so she could get some rest. Mike and Raven and Bruce fell asleep in the chairs but at 3am, I had to see her one more time and kiss her goodnight before I was able to try to sleep.
Early (6am) Friday morning a security guard came into the visitors waiting room, we had gotten 3 hours sleep in the miserable waiting room chairs for family and hadn't gotten any real sleep the night before, and rudely snapped the lights on signaling it was time for us to wake up. I was so tired, I just wanted to give him a good smack. We checked on Robbi. Her hemoglobin was still low (a sign of internal bleeding) and her platelets were low (clotting enablers), and even though her new liver was making bile which was a good sign, and her kidneys were working just fine, they told us she was going to need to go back into the O.R. and be re-opened, and any bleeders stopped, and making sure there were no other bleeders before closing her back up again.. An ultrasound was done and a hematoma was found on her liver. The blood transfusions to replace her lo hemoglobin and the plasma to replace her platelets continued, and she still looked a little yellow. She was using an alphabet board to spell words out, mostly asking when her hands would be untied and the breathing tube, which is very uncomfortable, could be removed. She had already started to breathe "around it" a little bit, which is a good sign, but makes the breathing tube more uncomfortable for her. She spelled out on the alphabet board she was hot and wanted ice washcloths put on her forehead, under her armpits, on her chest, in the groin, a bag of ice kept on top of her head, and all the ice-cold washcloth wiping we were willing to do. It kind of resembled hot flashes during menopause.
Soon, she was taken to the O.R. for the 2 hour procedure. When she came out and we saw her again in her ICU room about 5pm, half her IV lines on her right arm had been removed, her color was better, and she was again asking for the same ice routine. A little later Dr Cameron explained that the tube can make someone so 'anxious' it triggers an autonomic response and they feel like they are burning up. They have no fever, are not 'beet red' nor does their skin look red and hot. But the patient will feel like that.
At 5:00 Friday night she was still getting the icy washcloths and the medical staff were closely monitoring her labs, blood pressure, pulse, respirations, heart rate, and emptying her 3 drains that were slowly suctioning the blood from her abdomen, her urine output, and she still had the IJ lines and central line in her neck and still was connected to the ventilator with that breathing tube that was causing her so much misery.. But her pain level was good, she was becoming more alert.
At 7:00 when her Night Nurse (7pm-7am) came on, Robbi seemed to "turn a corner".
Her night nurse told her she would remove the hand restraints if she promised not to pull her tube out of her mouth. They would just put it back in anyway, the nurse said, so may as well leave it alone. She said there was a chance they would even remove that tube soon. Robbi was elated. This wonderful nurse,Rita, who had been working at Hopkins in SICU for 37 years, flushed her nasal gastric tube with ice water and it gave Robbi so much relief when she did that, because it helped cool her off a bit. About 10pm the Physicians assistant, another doctor,and Rita kicked us out and the procedure of removing 2 of her 3 lines in her neck (they left the central line line to her heart in) and the left arm arterial line. It took over an hour because the physicians asst. and dr had to apply pressure to these arterial areas until they clotted up and were no longer bleeding. They promised the breathing tube would come out next.
Robbi got a visit at almost midnight from her Pastor Randy, who was in Baltimore for a ballgame and hung out for a couple of hours with her and also Mike and I.
On SATURDAY SEPTEMBER 18 first thing in the morning the breathing tube was removed. Immediately Robbis problem with the overheating stopped. The nurses gave her a nice bedbath and tuned her back and forth a lot getting clean bedsheets on, one nurse gave her a cute french braid. Robbi discovered her TV worked and started looking for stuff she liked, she was allowed ice chips, then allowed to sip Hi-C fruit juice. The bed she was in can be made into a superhuge chair so they got her "sitting up in a chair" just by making the bed morph into one. Her noon labs showed her hemoglobin was holding at an acceptable level and her clotting was good (you could see good clots in her JP drains) so the blood and plasma transfusions were stopped. Everything is improving bit by bit but the doctors are pleased with the direction she is going in right now. They said they hope to be able to remove her right wrist arterial line and transfer her to the Transplant Unit Sunday. She took a nice nap this afternoon after Raven arrived, and they visited for a little bit, and is sleeping again now but will probably wake up a little later. Hopefully they will let her have clear liquids tomorrrow too. I have lots of pictures but will wait until I am home to try to post them to this log because the Hopkins wi fi is a little leary of posting on blogs and posting pics would probably get us logged off their network or publishing impossible.
We know everyones prayers are helping and we appreciate all the calls emails and texts about Robbis condition. Her family and many many friends love her so much.
Robbi's Mom
