Friday Jan 6, 2012

A lot has been happening with Robbi this week.
Everything was going along pretty uneventfully until Tuesday morning @ 5:30. She woke up throwing up blood. They immediately moved her to a room closer to the nurses station, and 5 minutes after I had her unpacked again they came to tell us they were moving her to ICU. They wanted her to have the nurses in ICU watch her closely. They gave her propofol and intubated her and connected her to a ventilator. They started her on continuous dialysis. They had her on a special mattress and a warming blanket on top of her. They did an endoscopy to make sure her esophageal varices weren't the thing causing the bleeding. What they found out was the side effect of the telepravir (medication-antiviral) was causing the inner lining of her mouth to slough off and her mouth had been bleeding, it caused her sleep all night while she swallowed the blood. Since blood is a natural emetic, she eventually threw up.
Mike and I were told that she was in very bad shape and might not even make it. Which of course freaked us out. They were having a hard time waking her up due to the all-day propofol that they had given her, her liver is in such bad shape it's not metabolizing very quickly and the propofol, which is usually a short-acting drug, was taking a long time to wear off.
Wednesday morning they had a meeting about Robbi and it was decided to take her off all of her antivirals. They were making her so sick it was necessary. She was able to hear us but not respond much Wednesday. Thursday at 4:30 they had a big meeting with all disiciplines- GI, Nephrology, Pharmacy, PT, Respiratory Therapy, Transplant team, Nursing- and made the decision to list Robbi as of the next day for a liver-kidney transplant. Because her MELD scores were so high- the high 30's- she went immediately to the top of the list. They told us that they would be getting offers from UNOS for organs right away and they would likely have to turn the offers down until she was medically stable enough to even survive the surgery. (Those organs are then offered to the next person on the list) Once she is stable, they said she would be transplanted. But, if her viral load moved from zero to anything else, they would not transplant her at all and she would eventually succumb to liver disease. A really hard thing for us to hear.
But by last night (Thursday night) she was increasingly awake and they told her if she continued to do well and get more awake, they would pull her ET out and she could get off the ventilator. She had already had the settings turned down and was initiating her own breaths but the vent was just giving minimal assistance. They have the removal of the tube tentatively planned for tomorrow (Saturday). Shes 100% alert but naturally her focus is on that tube being removed, its making her miserable. Then the focus will be getting her labs to where they are supposed to be so shes more fit for transplantation.

Please pray that Robbi's viral load stays at zero, where she will at least have a chance to be transplanted.

Robbi's Mom