Saturday, Jan. 28, 2012

Karis has moved from room 1187 (at the end of the hall) to 1179, right by the nurses’ station so that they can keep a closer eye on her, especially at night when we’re not with her.

Yesterday was an eventful day.  We had requested a meeting with the transplant team so that we could understand better how they were viewing her situation and how we needed to be responding to it.  Dan drove over from DC the night before so that he could be in on the meeting, and Valerie joined us from Brazil via Skype (I was surprised how well that worked!).  I was also surprised by how many people came to the meeting.  Besides Dave, Dan, Rachel, Dr. Costa and I (Dr. Kareem intended to come but wasn’t able to get free), we had 8 other people:  a doctor and social worker from Palliative Care, Bill Stein, our beloved physician’s assistant (who in our opinion holds the whole transplant team together!), the social worker from 11 North who organized the meeting for us, two of Karis’s transplant coordinators who help us when she is not in the hospital, the 11 North case manager, and one of the 11 North primary nurses, who coordinate the care of all of the patients on the unit.  So it was quite a gathering, occupying all of the seating in the 11 N lounge.

The meeting was made easier for us by the fact that Karis had definitely turned a corner toward getting better (Dr. Costa had greeted us Thurs. evening with “I don’t think Karis is dying!”  A couple of days before, we were not sure that she had any chance of getting better.  Since she had, once again, defied the odds, we were able to talk about some end-of-life issues without so much emotional intensity.

Dr. Costa was very helpful in clearly stating her medical condition, with hope that we might be able to get her back to some kind of baseline, take her through rehab for two or three weeks, and take her home.  He explained his belief that Karis has chronic rejection in her intestine, and rather than another acute episode, what had caused the days of bleeding was the infection, which kept chewing up her platelets and causing ulcerated areas in her intestine to bleed.  He also thinks that these repeated infections are due to translocated bacteria from her gut to her bloodstream via these ulcerated areas.  Treatment of the infection and replacement of the platelets stopped the bleeding; it just took a number of days and many blood, platelet, and cryo transfusions to accomplish this.

The palliative care doctor asked questions to help us make some decisions about what to do when/if we get to the point that Karis’s life is again directly at risk.  Dr. Costa explained that as fragile as Karis’s bones are, if they try to do CPR it will break all of her ribs, and she would not recover from that.  So we have agreed to make her code status DNR, do not resuscitate.  (Karis’s heart is strong so we don’t expect that this will be an issue.)  A harder decision is whether to make her DNI, do not intubate.  For now we have not made her DNI, understanding that decision can be reversed if she gets to the place that there is no reasonable hope that it is a lifesaving measure.  The only thing Karis hates more than being in the ICU is being on a respirator in the ICU.

I was very grateful for the unique opportunity this gathering gave us to say thank you to so many people at one time, who have invested in Karis’s care with such compassion and kindness.  As we head into the eighth week in the hospital, and since we can’t have Karis at home right now, 11 North is definitely where we want to be, our “home away from home.”

Dr. Costa just came by on morning rounds.  Dave wanted to ask him whether he thinks Dave should travel to Brazil tomorrow as scheduled for 12 days.  Dr. Costa said in his opinion, yes, Dave can go.  That’s an indication of Dr. C’s confidence that Karis is getting better.

The best thing about yesterday for Karis is that she was put first on clear liquids and then advanced to full liquids!  Karis was hungry, a great sign that she’s getting better, so she thoroughly enjoyed the cream soup, pudding, jello, popsicles and ice cream they let her eat, as well as juices and hot drinks. She handled it all well (ie., she didn’t start bleeding again), so they’re keeping her on the same diet today.  She sat up in a chair for awhile and enjoyed visiting with a friend and with Dan.

Today Karis’s white count took another leap higher, so Dr. C is starting her back on a high-power antibiotic (Daptomycin) that she was on in ICU but then infectious diseases asked him to stop it.  If her white count comes down by tomorrow, he will know this is a good decision.  Karis got very cold during the night with temps in the 94s, so she has a heating blanket and her temp has come up closer to normal (in the 96s at last reading).  Sometimes immunosuppressed patients get hypothermic rather than spiking a high temperature when fighting infection.  Her platelet count has dropped again, as it does with infection, but not terrible (62), not enough that she will start bleeding again, at least so far.  Bands, which indicate the body is under stress, jumped from 3 yesterday to 23, consistent with the jump in white blood cells.

Otherwise, Karis’s labs in general are better.  Her bili is down to 2.6!  BUN is a little better, down to 85 from 88 yesterday.  Though she’s still a little confused, her ammonia level, which was in the 40s, is down to 38 today.  Every little bit helps when it’s going in the right direction!

Please pray for Dave’s decision about whether to travel to Brazil tomorrow. The meetings he has scheduled are important ones, so I’m encouraging him to go, but it’s not an easy decision for him since Karis is so unpredictable.  Please also pray for Valerie, who is trying to decide when/whether she should come back to Pittsburgh from Brazil.  If the airline tickets weren’t so expensive these decisions would be easier!

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