Sunday, May 27, 2012 Pentecost

Lord, send forth your Spirit, and renew the face of the earth.

We enjoyed a wonderful trip to DC for Dan’s graduation from SAIS (School of Advanced International Studies) of Johns Hopkins.  Karis did great and participated fully in all of the activities.  Dave was able to fly to DC from Paraguay/Bolivia to join in on part of the fun and the drive back to Pittsburgh on Saturday.  After resting for 24 hours, Karis had enough energy to go to church this evening and plans to attend a picnic tomorrow.  Many blessings!

Sat. May 19, 2012

Karis spent last evening at the hospital but is home now and doing fine–in fact, she’s on an outing with Rachel to Moraine State Park to enjoy this beautiful day!

Thurs. May 17, 2012 Happy Birthday, Michelle (yesterday)!

Today was Karis’s first time back in clinic for two weeks!  Instead, a nurse has come to the house to draw labs–so much easier than spending hours and hours at clinic.  Today though we were glad to be able to ask a doctor some questions, particularly about the very high volume of diarrhea Karis has been having (4-5 liters/day, a liter more on average than when she got out of the hospital).  It’s hard to compensate for such high loss every day and still have energy–or time off the IV pole–to do much else.  Dr. Hero prescribed a medication to try to slow things down (a different med from the ones that tend to put her in the hospital with obstruction).  He also increased the volume of her TPN, in addition to the daily hydration regimen we’ve been following.  While her electrolytes are kept in good balance through constantly adjusting her TPN, several of her medications are not yielding high enough blood levels to be therapeutic (important ones like Prograf and Coumadin).  And of course the constant battle with dehydration is hard on her kidneys and other organs.

The doctor approved our 3-day trip to DC next week for Dan’s graduation, as long as we figure out how to keep fluids running into Karis.  I think we can use her TPN backpack for other fluids during the hours she’s not on TPN, and run fluids during the night as well, so that she can have maximum mobility and not miss out on fun activities.  Please pray though that she will stay well during the time we’re gone!  As far as we can remember, Karis hasn’t been out of state (and only a couple of times out of Pgh) for the last 2 1/2 years, since her adventures in Maine for Chrissy’s wedding.  So this feels like a big adventure!

We’re a bit worried about our friends Ashley and Carissa, so if you could pray with us for them, we would really appreciate it.  Thanks.

Thurs. May 10, 2012 Happy Birthday, Dan! Grieving with the Como and Rice families the loss of Maureen

Karis and I had the privilege today of attending the funeral of Maureen Como, who died Saturday night.  Maureen was the longest-surviving liver-intestine recipient in the world: in August she would have celebrated 22 years since her transplant.  She was a “torchbearer” for the rest of us in the intestinal transplant family, always encouraging and looking out for those who came into this experience after she did.  We feel a little disoriented, like we’ve lost a direction-finder we had come to rely on.  Maureen had been suffering some complications the last couple of years, but her death came suddenly and unexpectedly, a cardiac arrest in the middle of a conversation.  Everyone is reeling–her family her doctors and nurses, all of her friends.

Every time we lose one of our transplant friends our world changes.  There have been so many losses these last months that it’s hard to absorb the impact.  This evening Karis and I are taking some time off from trying to “accomplish” anything and are just going to rest and relax.

Sunday, May 6, 2012 Happy Birthday week, Pete and Karis!

Sorry I haven’t updated for awhile.  Life has been so busy that entire days go by for me without even opening the laptop.  Karis is doing pretty well.  We were so happy that she was home from the hospital for her birthday!  Many thanks for the calls, cards, visits and balloons that made her day more festive.  We are grateful that God allowed Karis to celebrate one more birthday here with us, and for the donor families who made this possible.

Karis’s birthday was made extra-special by the visit of friends Brandon and Claire and their two darling daughters, who spent the night on the way back to Notre Dame from Dubai/India/Rhode Island.  We hadn’t seen them for over a year and it was great to catch up and meet baby Marta.

After they left, we had a family birthday lunch with Rachel (missed Dan and Valerie!).  Karis slept during the afternoon so she would have energy for an evening surprise, which included three friends taking her out for a Thai dinner.  Karis had a great time, and was sound asleep within five minutes after they left.  I had to wake her up for her bedtime meds and routine.

Medically, the main issue at the moment is Karis’s kidneys.  Kareem thinks the antibiotics for the pneumonia were hard on the kidneys; in fact, he stopped the antibiotics early and we’ve been battling to resolve dehydration and get her kidneys happier.  The problem is that when we give her the fluids that her body and kidneys need, she third-spaces into her tissues and lungs, which gives her shortness of breath.  We don’t completely understand why the fluid isn’t staying within her blood vessels, since her protein levels are pretty good and most of the fluid we give is 5% Albumin.  But her labs have been showing significant dehydration even though her body is swollen and there is fluid in her lungs.  Please pray for wisdom especially because Dr. Kareem is traveling–he seems to have a different approach from some of the other docs.

We received several calls from the hospital over the weekend recommending that we change or do this or that due to an analysis made by Dr. Hero.  Since we weren’t able to actually talk to him to understand his reasoning, and since what he said to do didn’t make sense to Karis (she doesn’t agree with it), we’re mostly waiting to see what her labs look like on Monday to decide what to do next.  Before he traveled, Kareem gave Karis a little lecture about being in charge of her own care and gave her a list of parameters and instructions to follow no matter which doctor cares for her at any given time.  I think this is because some mistakes were made by residents and a fellow the last time she was in the hospital, that Kareem thinks we should have caught and prevented.  So Karis feels empowered to say “no” to what she doesn’t understand or agree with.  Please pray that we make good choices and that we understand what is really best for her!

We would appreciate your ongoing prayers for several friends who are struggling, and for our friend Timmy who is recuperating from emergency gallbladder surgery.  Please remember also the families of our friends Angie and Pauline who died a year ago (April 29).  We miss them still.  Thank you!

Dave travels today to Bolivia and Paraguay for three weeks.  It would be so great if Karis could stay well during the time he is gone!

Fri. April 27, 2012 Happy Birthday (yesterday), Battle!

Karis was released from the hospital late yesterday afternoon.  She will be treated with IV antibiotics for ten more days at home.  She still prefers to spend most of her time resting or sleeping, but is very happy to be out.  As she often says on her way home from the hospital, “Freedom!!!”

Wed. April 25, 2012 Grieving for our friend and Brazilian missionary colleague, Ary Velloso, who went Home this morning

Karis is doing well; in fact, if her labs are good tomorrow, Dr. Costa says she can go home and continue antibiotics there.  Yesterday he was saying a week in the hospital . . . so I guess he’s impressed with her progress.  She’s resting now without needing oxygen, and walked in the hall this morning.  I’m so glad they caught this early so she never got really sick!