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!

Not so great news:  Karis has another blood infection.  Cultures this morning were positive for gram negative bacteria, even though she’s on an antibiotic for gram negative.  Must be one that Meropenem doesn’t cover.  We weren’t surprised, since her white blood count shot up yesterday and was a little higher yet this morning.  She just got back from interventional radiology where they switched out her line yet again–the fourth time in about two months!  Once again they tried to get a line into another place, with no success.  We’re grateful she still has the IJ open!

So far this bacteria, whatever it is, hasn’t put her into septic shock.  On the contrary, her blood pressure has been running really high.  We prefer high.

Several nurses we hadn’t seen yet since returning to 11 North said welcome back home.  That is exactly what it feels like after being in the ICU.  A couple of them confided how hard it is to see Karis suffering as she is.  Everyone wants to help; they are helping.

A couple of times we were able to find positions for Karis that were comfortable enough that she could rest, even without the pain medicine she begged for several hours before she could have it.  And late afternoon, her nurse managed to get the doc to agree to every four hours instead of every six!

The doc thought another unit of cryo would stop Karis’s bleeding.  It didn’t.  But she had been so beefed up by the transfusions of the previous days that even though her hemoglobin dropped three points, she still didn’t need to have a transfusion yesterday. (Today, certainly she will need one.)  The nice thing about not having a transfusion is that she doesn’t have to go through the frequent blood pressure checks, each one painful for her.

A friend came to stay with Karis for a few hours so I could go home and clean the house before Dave got back, and buy groceries.  I was just starting to make supper when another friend called and said she had just put dinner into the oven for us!  So instead I got to go back to the hospital and get Karis up in a chair and wash her hair so that she would feel and look nicer for her dad.  Another friend popped in and sat and chatted with us, and Karis sat up in the chair for 2 1/2 hours!

During that time, Karis wanted to talk with her brother, but when we got him on the phone she seemed very confused and wasn’t able to converse.  (Sorry about that, Dan!) We found out why: her blood sugar was 38!  Karis was thrilled to be able to drink a glass of apple juice!  But it wasn’t enough and she started to pass out (still sitting in the chair).  I was able to hold her while the nurse ran for a big syringe of dextrose to shoot straight into her IV.  Watching her open her eyes again, and see them turn bright, and feel her straighten her body, and speak sense again, was like watching a wilted flower suck in water on a high-speed camera.  Three nurses were able to get her back into bed, pushing through her protests and cries of pain.  And it was after THAT our nurse convinced the doc to shorten the time between doses.

While Karis was up in the chair, her right arm and hand blew up like a balloon while her left side stayed normal.  I have no idea what that was (is) about.

Karis was settled in bed when her dad and our delicious dinner arrived (another friend battled through rush-hour traffic to pick up Dave and Rachel at the airport).  The visit to Dave’s mom was a wonderful one, a memory-maker.

Karis received three cards in the hospital mail yesterday.  Thank you, Linda and Michelle and Crysta!

Karis wanted to write a letter to a friend.  She asked me to write for her.  ”Querida Carol,” that’s as far as she got.  But she was thinking and praying for you, Carol, and Cristina, and Felipe, and all of your family.  She spends most of her time thinking about her friends and praying for them.

We are blessed.

Thank you, Jane!

I think we will all sleep better tonight!  Praise God for many blessings.

I think it will do Karis a lot of good to get out of this environment.  When I arrived this morning, Karis saw me in the hallway outside her room and yelled, “Mom, I love you, so don’t come in!  There’s a bomb just about ready to explode, in the wall of my room!”  She is fixated on this bomb idea, so we’ve talked several times through the fact that her liver and kidneys aren’t functioning right and so there is stuff in her blood that’s making her think things that aren’t true.  None of the “logic” helped very much.  What did help was offering to God her fear, and asking for His peace in its place.  She has been sleeping peacefully for the last half hour.

I feel very privileged because Dr. Costa spent about an hour of his precious time with us this morning.  He had me sit down next to him while he carefully went through all of her stuff on the computer:  ”OK, now we’ll do biochemistry . . . now let’s look at the ultrasound of her liver . . .”  (Periodically we were interrupted by Karis yelling from her room, “Mom!  Dr. Costa!  You have to get out of here!  The bomb . . . !)

Of note, from all that Dr. C explained to me:  Karis’s liver numbers have shot up (bili 11.1 today) and kidney numbers continue high (BUN 118).  This means that medications and other substances are not metabolized or filtered properly, which throws other lab values off (and accounts for Karis’s confusion today, and the once-familiar yellow cast to her eyes).  She continues bleeding from her intestine.  Dr. C says most likely the rejection has flared up again and is causing damage to her liver (though it’s possible that her liver is reacting to something in the blood transfusions from yesterday).  But there’s no point doing biopsies because even if they confirmed rejection, they are not going to treat it:  Karis would not tolerate the treatment.  They are giving her more platelets and cryo to try to stop the bleeding, and are checking her H & H every six hours to see whether she needs more blood.  Her blood pressure has been running very high so adjustments were made in those medications.  Re. the pain in her right shoulder and right hip, he said it’s possible that infection has settled into those places (the skin is red and hot), but he’s confident that she’s on the right antibiotics and that seems to be the right treatment for now.  He really wants to get her off the Dilaudid, but he saw the pain she’s in and agreed to leave it (tho he did not increase it).

Bottom line for Dr. C is the question of whether Karis has enough reserves to fight all of the problems she’s dealing with right now.  We know that the bottom line is what God wants.

I found out that Dr. C’s birthday is the same as Valerie’s, Jan. 18!

Dr. Costa made rounds early before I was allowed in this morning, so I didn’t get to talk to him.  I hope I’ll get to see him tomorrow.

Karis was much more awake today, which was good in the sense that we had some time together, and she was able to say hi, at least briefly, to her visitors.  But it was difficult because she was in so much pain from her right shoulder and right hip, and she was hungry and thirsty but not allowed to eat or drink (because of the bleeding from her intestine, but the nurse did not explain that to us), so we had some tears.

Karis did ask to get out of bed and into a chair.  That was quite a production, but 3 nurses handled it with skill.  Karis sat up in the chair for about 45 minutes before she got too tired and asked to go back to bed.  She was happy when there were pills to take because she was allowed sips of water to swallow the pills.  She did not understand why I left her (during the times when visitors are not allowed) and cried when I had to leave tonight, so that was hard. She had just had pain medicine so I hope she’ll be able to relax and sleep.  The nurse said he tries to time what he has to do with her to coincide with her pain medicine, which I’m sure is very helpful.  Dr. Costa actually cut her Dilaudid today from every four hours to every six.  She just can’t handle that, so the nurses have been splitting the dose and giving her half every three hours.  That’s one of the things I want to talk with Dr. C about.  He may have seen her sleeping and not understood the severity of the pain (he’s just coming back on as the transplant attending).  I wish I knew what is causing the pain–that’s another thing I want to talk about with Dr. C.  I’m sure that this whole situation is tough for him, as for Dr. Cruz; they care so much about their patients and we have the special bond of being from Brazil.

Forgot to mention that both her kidney numbers and her liver numbers were worse today:  bili up to 3.3.  First time that’s happened since transplant, as far as I remember.  BUN 98, creatinine 1.2 (her baseline is 0.9).  She’s third-spacing again, starting to get swollen.  Her albumin today was 2.8.  I think they didn’t give her albumin because of all the blood.

ICU visiting hours go to 6:30 pm and then only a half hour, from 8:30-9:00, in the evening.  I wasn’t able to visit her in the evening because there was a crisis going on with someone else on her wing and they kept everyone out.  But I talked with her nurse later who told me that she woke up again late evening, was again upset about being in the ICU, and hungry enough to eat a sandwich.  Sounds like she’s definitely making progress!

I brushed the snow off of two packages that arrived for Karis, a beautiful prayer shawl from Kansas (THANK YOU, Jo Ann!) and an intriguing book called Akiane from Illinois (THANK YOU, Mary and Jeanine!).  I can’t wait for Karis to wake up enough to enjoy these lovely gifts.  I spread the shawl over her and it has transformed the room.  I tried to show her some pictures from the book but she wasn’t able to focus on them.  Maybe tomorrow.  I turned the bright lights on in Karis’s room to try to help her know that it’s daytime.  It’s so easy to lose track in here.

When I came into the ICU and greeted Karis, I was rewarded by her smile, even though she didn’t open her eyes.  She hasn’t had to be in ICU for a long time, but several people here have commented that they remember that smile.  Karis has been able to wake up a tiny bit more today than yesterday.  Dr. Cruz says she’s not stable enough yet to move back to the floor.  Apparently another bug has grown out of her cultures.  Her platelet count has plunged again, and he says it’s due to this sepsis.  Her blood protein level is very low so they’re going to give her albumin and continue to keep an eye on everything in case she starts crashing again.  He said MAYBE tomorrow he will feel good enough to let her go back upstairs.  There aren’t any rooms available on 11 N anyway; I found that out from our friend Michelle’s dad, because she just got the last one.  Please pray for Michelle.

Our normally jovial Dr. Cruz was sober this morning.  He shook his head and said if they hadn’t caught this sepsis of Karis’s as soon as they did, he doesn’t think she would have made it.  We have to break this cycle of infections somehow because every time she gets weaker and less able to fight back.  He wishes we could get rid of her central line altogether, but since she’s dependent on TPN and IV steroids, that’s not a possibility.

The ICU doc in charge today is a graduate from Notre Dame!  We had fun comparing notes and got a couple more smiles out of Karis.  Her nurse today is a very sweet gal who drove an hour on not-yet-plowed roads to care for us today.  Her kindness helps so much.