22 ~ (May–June 2005) Time Out for
Another Airplane Story
Dr. M sat with us in Karis’s hospital room, chatting. It was March 24, 2005, and Karis had been in the hospital for exactly seven months. Dr. M had come by to tell us that he thought Karis could go home the next day!! Hurrah! After all that she had been through, what exciting, incredible, wonderful news!!
Taking advantage of the upbeat atmosphere, I broached a few ideas that Karis and I had been talking about. First, could Karis have a pass the next day to attend a Good Friday service at church? That was an easy one. Dr. M quickly said yes.
I gathered my courage for the next one. Karis’s classmates would be graduating from Notre Dame in May. Might Karis be permitted to travel to South Bend for “Senior Week,” to spend time with her friends before they scattered all over the world?
This one was tougher. We talked about pros and cons, possible problems and complications, what we would do if this or that happened . . . Finally, Dr. M said yes, she could make plans to go to South Bend.
I took a deep breath, looked at Karis’s hopeful face, and plunged in with our third request: Karis hasn’t been home for a very long time . . . she really misses her friends there . . . once she’s back on the transplant list she won’t be able to travel anymore outside of Pittsburgh . . . could she possibly think about a trip home to Brazil??
Dr. M started laughing. “You’re a politician, aren’t you. You had this all planned out—catch the doctor in a good mood, warm him up with an easy request, stretch him far enough to agree to something just a bit outside his comfort zone, and then while he’s still feeling good about what a great guy he is to make these people so happy, sneak in with the really big one! I’m taking notes to try out this technique at home!”
YES!! He said yes!!! And Karis would have time out of the hospital while still in Pittsburgh for both of us to get used to her home routine before we traveled!!
Karis was actually released from the hospital March 29th, five days later. Here’s what I wrote for her web site the next day: “These are very busy days as we get organized to take care of Karis at home. She has 12 IV interventions between 6 a.m. and midnight, using three different pumps, plus oral and G-tube medications (ten different medications), plus dressing change and tube care, plus physical therapy and occupational therapy and what's called "activities of daily living" (today she got to take her first shower since August!! She literally squealed with delight!). So far we've had four nurses here at the house at different times teaching us everything, and the physical therapist will come for the first time tomorrow. Karis also has a clinic visit back at the hospital tomorrow afternoon.”
Our planning for Notre Dame and Brazil began in earnest. Senior Week at ND would be May 9-15th. We bought plane tickets to Brazil for May 18th, to return to Pittsburgh on June 18th.
Meanwhile, I spent April 10-26th with David and Valerie in São Paulo, a trip that had been planned before we even thought of the idea that Karis could go to Brazil. In preparation for my time away, I wrote a 12-page daily care manual for my sisters Linda and Jan, who generously took over while I was away. This trip proved to be a wonderful time for me to be able to just focus on Val and Dave.
A few days after I got back, on April 29th, just as her aunt Karen and cousins had arrived in Pittsburgh for a visit and 10 days before we planned to travel from Pittsburgh to South Bend, Karis spiked a fever, and ended up in ICU for five days with sepsis! Once Karis was over the “really feeling bad” part of the infection, we plotted our strategy. We wouldn’t say anything about the trips until she was out of ICU, because otherwise the doctors would surely say no. In fact, we wouldn’t say anything until she got her first negative culture. Then we would simply inform Dr. S that she was going, because Dr. M, the big boss, had already given his approval. (Dr. M was conveniently spending a few weeks at Children’s’ sister hospital in Italy.)
Meanwhile, I kept working away at getting everything ready. This thing was complicated. It required all of the organizational skills I possessed. The Notre Dame trip would be like a dry run. Hopefully we would make all of our mistakes while still in the US, so that we could avoid complications during our time in Brazil.
We knew that PA Medicaid would not pay for anything in Indiana, much less Brazil, so whatever we might need had to go with us. I made extensive lists and careful calculations, going over everything several times with the home health supplier (once approval had been granted by Karis’s insurance case worker for us to receive extra supplies all at one time). We could take with us enough TPN for one week. For the other three weeks in Brazil, Karis’s beloved Dr. G in Brazil was arranging for TPN from a supplier in São Paulo. This and her weekly blood tests we would have to pay for out of pocket. But if we made our calculations correctly, we could take all of her other medicines and medical supplies with us.
Dr. G also sent us letters written in both English and Portuguese explaining Karis’s need for all of this stuff. We hoped the letters would help us get through customs.
I bought extra coolers with wheels for the TPN, IV’s and medications that had to be kept cold. As I started packing IV tubing, extra G-tubes and drainage pouches, dressing change kits, syringes, tape, and extra batteries for her three portable IV pumps, it became apparent that what Karis needed to survive for a month was going to take up all of our luggage allowance. We wouldn’t be able to take anything with us to Brazil, except a change or two of clothes for each of us.
On May 4th, four days before T-day (travel day), Karis was moved out of ICU to 7 North! But her blood cultures were still positive. We started getting concerned, although optimistic Dr. S approved the plans for both South Bend and Brazil!!
May 5th (Karis’s birthday; 3 days until T-day): cultures still positive! Yikes!!
May 6th: still positive. We stopped counting, stopped even talking about the trips. Couldn’t bear to even think that they might not work out.
May 7th: first negative cultures! And Karis started tolerating periods of time off of oxygen!
May 8th (once imaginatively called T-day): second day of negative cultures! Karis was strong enough to go to morning church on a pass out of the hospital, though exhausted afterwards.
May 9th: third day of negative cultures, and Karis was released from the hospital late afternoon! While she rested at home, her pharmacy supplier and I scrambled to get everything ready.
I suppose I should mention that before we left the hospital, a member of the transplant team came to talk to me, saying that she knew Dr. S had OK’d the trip to Brazil, but that the rest of the team thought we were absolutely crazy. Had we really thought through the condition Karis was in, all that could go wrong, how we would manage without insurance coverage in Brazil if anything did go wrong? She left shaking her head, saying they were all going to worry every single day until we got back to Pittsburgh.
Well, sometimes, to live, you just have to take risks. Even big risks.
May 10th: off to South Bend, with the car stuffed with medical supplies!! Thank you, Lord!!! Karis had a wonderful reunion with her graduating friends and classmates, followed all too quickly by the pain of having to say goodbye again, this time—for many—perhaps for good.
When I next had time to breathe again, AFTER we were settled at home in Brazil, I wrote the following about what I had learned through the trip to ND:
- Managing time is like the freeway at rush hour: no matter how you try to plan and space things out, when you have to put on the brakes there's liable to be a crash-crash-crash chain-reaction pile-up of people you still want to spend time with and things you still want or need to do.
- Saying goodbye is tough. Especially when you only just got to say hello again, after such a long time apart from so many dear friends. Count on needing space for tears.
- When you think you've lost the zip-lock bag of Reglan, and with it a large piece of your sanity, don't panic. Dig a little deeper--it's probably still there, down at the bottom of the box--along with the other resources you need for the day.
- Always pack an extra G-tube!
- Don't leave home without a spare shirt or blouse (not knowing when one of Karis’s tubes might leak).
- When you don't do #4 or #5, you will be very, very grateful to the people who rescue you.
- When the pharmacy says it will ship Neurontin to you in South Bend by 2nd day air, that really means it will be delivered to your home in Pittsburgh. In other words, you gotta take it with you.
- When the airline tells you there is no record of your reservation to Brazil, don't panic--stop yelling into the phone--it just means they spelled your name wrong.
- Read ALL the labels. Identical packaging doesn't mean it's more Metoclopramide--this time it is Diphenhydramine, even though last time it came in a little brown light-proof bag. In a pinch, when you think you don't have IV Benadryl and know that Karis will break out in an itchy red rash top to toe if she receives her antibiotic without it, run to the nearest 24-hr. pharmacy and buy liquid oral Benadryl. Twice the normal dose through the G-tube just might work. Moral of the story: doubtless there's a creative way to solve this problem by 6 a.m., even if it takes you half the night to figure it out. But for less stress, find your glasses and read all the little labels.
- No doubt packing 15 medications, 3 pumps, tubing, syringes, and all the stuff that goes with it all will get easier with practice. Next time freeze twice the number of ice packs for the cold things.
- MOST IMPORTANT: God's grace is renewed every morning, even outside of Pittsburgh!!
The morning of the day we left for Brazil, we were able to pick up Karis’s new brace. What a blessing to have one that actually fit her properly and didn’t rub sores into her skin! Karis was able to walk so much more easily with that brace—a real blessing for São Paulo, which is hardly handicap-friendly.
And now we finally get to the airplane part of this airplane story.
First of all, there are definite advantages to traveling with a companion in a wheelchair. There are times when you get taken to the front of the line.
On the other hand, she might get whisked away by an airport person to the front of the security line, while you’re still about half a mile back, holding her boarding pass and ID! When you try to go find her, you get treated very rudely, like you’re making up a story to try to get away with something, and ordered back to the end of the line! And when you finally make your way to the front where Karis is, the security people yell at you all over again because you had this girl’s papers, and don’t we think the airport person has more to do than just stand there and wait!!
And then, of course, they decided to give Karis the third degree security check: every pocket in her IV pump backpack, every single medicine, detailed accounting of each of the medical supplies we had to take on board with us. They were not impressed at all with Dr. G’s carefully written letters.
But wait—I forgot to tell about checking in! We had allowed extra time at the airport for check-in, because every detail of life just takes longer. We had two coolers and a fair amount of other medical stuff that we had to take on board with us. The agent was actually very nice about that. But she refused to give us seats next to each other, insisting there were only certain seats available for the type of tickets we had. We couldn’t seem to manage to communicate that on a crowded airplane, with all of the IV interventions that Karis would need en route, it was absolutely essential for us to be together. There were things that Karis literally could not do for herself. How would I care for her—kneeling or sitting in the aisle beside her seat, trying somehow to keep things sterile while other passengers squeezed by me??
Even with Karis right in front of her receiving an IV transfusion as we talked, with her two large drainage tubes and bags, the brace on her right foot and leg, holding her cane, the agent just didn’t get it. No, she could not move any other passengers. We would have to see what we could work out once we were on board.
Once we got to our gate, the airline agent decided to go ahead and board Karis. But no, I would have to wait with everyone else. An airport person whisked her off once more.
When I got to the plane, with my two coolers and bags of all our other paraphernalia, the flight attendant greeting the passengers pulled me aside and asked me to wait to talk with the crew chief. That poor lady was upset. Didn’t we know that the flight crew was not trained to deal with IV’s, etc., etc., and anyway they had a plane full of other passengers to care for. Puzzled, I finally figured out that the source of her unhappiness was in the fact that Karis and I were not seated together! She had drawn the conclusion that I was just going to “dump” Karis on the crew and go have my own happy ride somewhere else in the plane.
By this time I had spied Karis, with her IV pump beeping, sitting uneasily in one of the first class seats, mouthing to me, “I tried to explain, Mom!” Following my gaze, the crew chief explained that she had kept Karis there until she decided whether she was going to allow Karis to travel or not. Once we understood each other, the crew chief went to talk with two passengers in bulkhead seats, asking them to switch with our assigned seats, which they were willing to do. The bulkhead would give us more space for managing all that we would have to care for while on board, and it was close to the restrooms. (In fact, it was already past time for Karis to receive her IV antibiotic . . .)
As we gratefully settled in for the ten-hour flight, we noticed the downside of bulkhead seats: immoveable armrests. Karis wouldn’t be able to stretch out during the flight. Well, we would do the best we could—at least we were on the plane!
The first time I pulled out a syringe and needle, once the plane was in the air, the passenger next to Karis turned green. He got up and disappeared. There must have been an empty seat somewhere in that crowded plane, because we never saw him again. It was actually very helpful to us to have that much more empty space. By this time Karis was exhausted. I spread a blanket on the floor in front of our three seats and helped Karis lie down there. The next time a flight attendant came by, she started to object, saying this wasn’t permitted. But as she looked at Karis she changed her mind and decided to let her stay there. Sometimes it’s easier to get forgiveness than permission!
Things progressed quite smoothly after that, though it was a bit awkward every time I had to get things out of the storage compartment, especially from the heavy cooler. (Bulkhead seats have no under-the-seat space.) The next big challenge for me was to decide how to fill out the customs form. Between us, we were officially allowed to take in to Brazil not more than $500 worth of new merchandise. Karis and I had with us over $10,000 worth of medical supplies and medications. Yes, we had the letters from Dr. G explaining Karis’s need for all this stuff. But in my memory was another trip a few years before when we had been charged customs duty on the full price of a certain medication--$3,000—because it wasn’t on the list of importable meds. (We had tried to appeal this decision through a complex bureaucratic process, but when it reached the point of requiring that we hire a lawyer, we had given up.)
I filled out the form as clearly and honestly as I could—there was no point even trying to imagine we could “smuggle” all this stuff in—and spent the rest of the flight worrying. If the customs people on the ground in São Paulo chose to follow the letter of the law, we would have no choice but to catch the next return flight to Pittsburgh. But God had brought us through this far . . .
Before we landed, the flight attendant gave me a large, bright red bio-something-or-other bag for disposing of all our syringes, needles, empty IV bags, etc. We waited until all of the other passengers had deplaned and then the flight crew, by then very friendly and helpful, assisted Karis to the wheelchair waiting for her and helped get our coolers and other stuff out the door of the plane.
(An amazing thing happened on our return trip a month later: we had the very same crew chief and flight crew, who that time knew exactly what we needed and how to help us through the flight! What a special gift from God! The only comment-worthy thing about that trip happened during check-in at the São Paulo airport. The agent asked what her IV pump was, and without thinking, Karis said “É uma bomba de infusão,” but all the agent heard was “bomba.” The words for pump and bomb in Portuguese are the same! That caused a bit of a stir . . .)
As I pulled our four large, heavy bags off the baggage carousel while Karis waited nearby in her wheelchair, I was sending up some of those desperate “arrow” prayers, “It’s all or nothing now, Lord!” To go through customs, there is a choice of two lines, “Nothing to Declare,” or “Goods to Declare.” I pushed Karis into the “Goods to Declare” line, then ran back for our two heavily loaded baggage carts.
We were working our way down the line—push the wheelchair forward, then run back for one of the carts, then for the other—when suddenly a uniformed person appeared beside us and said we were in the wrong line. I said no, we had goods to declare, and showed her our customs form. She took the form from me but didn’t even look at it. While gesturing to another airport person to come and help us, she grabbed Karis’s wheelchair and moved her to the front of the other line. She handed our form to the agent checking people through, who also didn’t even look at it, and just waved us on! The two airport people helped us with the wheelchair and our two carts until we reached the lobby where David and Valerie were waiting for us.
All the way home, I kept looking behind us, expecting to see a vehicle with siren and lights flashing to pull us over. I was sure that at some point the customs people would realize they had made a mistake and would be after us! But no, other than the usual adventures in São Paulo traffic, we made it home peacefully. I could only imagine God high-fiving the two—no, three—Portuguese-speaking angels whom he had dressed up in airport uniforms that morning!!
Karis describes her month at home as bittersweet. It was wonderful to be home, to be surrounded by her family and Brazilian friends. At the same time, it was very, very hard for her to be back in São Paulo so debilitated, so reduced, feeling herself just a shadow of the person she had once been in that place. Her illness and weakness, the constant pain, high levels of pain medication and of Benadryl to deal with a reaction she had to the antibiotics, those awful tubes and drainage bags that she had to drag around, and her difficulty in walking, all conspired to sabotage most of what she had imagined she would be able to do while she was home. One month wasn’t long enough to rebuild her friendships, after being gone so long.
Karis spent most of her time lying on the living room couch, in the company of one or two friends or family members. As hard as it was though, she ended that month at home stronger emotionally than when she had arrived.
One more detail needs to be told, to the glory of God. A few weeks prior to this trip, a friend had gifted us with the tithe of an inheritance she had received. The costs Karis incurred in Brazil for TPN, blood tests, and extra pain medication that we had to buy, came to exactly that amount of money (thanks to Dr. G’s insistence that we not pay for Karis’s weekly appointments with him)! Had Karis been hospitalized or had any extra procedures while in Brazil, we would not have had the money to pay for these expenses (except that God has an utterly amazing way of supplying for our needs, so I’m sure he would have done it somehow!).
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