Monday, February 20, 2006

Preval Declared President! Emmanual Released from Intensive Care!

Some kind of logic finally prevailed in Haiti, and Rene Preval,with more than 50 percent of the vote, was declared the president of the beleagured nation Here’s a recap of what happened: on Tuesday, February 7, Haiti held their long awaited presidential elections. There was a big turn out throughout the country. As the votes began to be tabulated, Preval, the front runner of the 33 candidates, was racking up 60 percent of the vote. As the counting continued, his total mysteriously fell below 50 percent—this is important because if one candidate received more than 50 percent of the vote, there would be no run off in March. I say mysteriously because several poll watchers had predicted based on exit polls that Preval would garner about 52 percent of the vote.

When his percentage fell below 50 percent, the people took to the streets demonstrating. They also somewhat hilariously crashed the Montana, Haiti’s luxurious hotel, and swam in the pool and frolicked around the grounds. Fortunately no damage was done. The protests were by and large peaceful—some burning tires and car husks—but the only people killed were two demonstrators shot by U.N. soldiers. (Note the distinction between the protesters being peaceful and the soldiers being peaceful)

Preval called for calm even as he said he knew there was voter fraud. This seemed to be confirmed when huge batches of ballots with his name marked were found smoldering in a dump. This, along with all the blank ballots—possibly people were stuffing the boxes to lower Preval’s percentage—convinced the Electoral Council to call Preval the winner. I am hoping that President Preval will be the man who can bridge the gap between Haiti’s rich and poor. May he have a productive, peaceful term.

And our little guy Emmanual is out of intensive care! He’s in the step down unit, where he will be watched closely. If he continues to progress like he has, he will be out of the hospital soon and home to his wonderful host families, where his main job will be to do some serious eating. Emmanual looks so much better than when we brought him. He has folds in arms, instead of sagging skin. His color is much darker. He is much more likely to let you know when he isn’t happy.

The doctors at Cleveland Clinic are very interested in Haitian Hearts. Dr. Geoff Rosenthal, the pediatric cardiologist, who facilitated our kids being accepted by the Clinic, asked John to give a presentation on practicing medicine in Haiti and Haitian Hearts. Cleveland Clinic has accepted two more of our children. We hope to have a long and happy relationship with them.

Thursday, February 16, 2006

Emmanual and His Angel:

Emmanual is off the ventilator! He is breathing well on his own, with an oxygen saturation level of 100%. The only difficulty he has is a slightly swollen upper airway, which produces stridor, or a wheezing sound caused by the narrowed passage.

Airway maintenance, which is the A in the ABC’s of basic patient management, is a critical concern, and the doctors and nurses will be watching Emmanual closely to ensure that his throat doesn’t narrow any further and make it difficult for him to breathe. The swelling is likely caused by the ventilator tube that was down his throat for a week.

In his first 24 hours off the vent, hospital staff didn’t feed Emmanual, and this made him mad, mad, mad, which was a good sign. Today they gave him formula. He gobbled it down and wanted more. “He’s refusing to go to sleep,” said John, “Because he wants more food.” He is alert and looks good.

Emmanual’s continuing recovery points up why doing heart surgery in Haiti is so difficult. It’s not just about the surgery, but the all important recovery. A U.S. medical team could have flown to Haiti and fairly easily surgically repaired Emmanual’s VSD. But in Haiti, he never would have survived the recovery period. Haiti doesn’t have the equipment or staff to maintain a baby like Emmanual, post-surgically. And visiting teams typically don’t stay until a patient is ready to go home from the hospital.

When I heard Emmanual had a narrowed upper airway, it reminded me of another child we saw in Haiti this past September. A mother brought in her four-year-old daughter wearing a frilly pink dress with her hair in braids to the Grace Children’s Hospital clinic. The little girl had a more severe case of Emmanual’s airway condition. She wasn’t really conscious and was breathing hard. It was quitting time at the clinic. John brought me in the room to show the little girl to me, saying, “She has a life-threatening problem.” As I watched her, she looked as healthy as could be, except for her labored breathing.

We took her over to the hospital and they hooked her up to an oxygen tank. She was going to need a tracheotomy, and the only place that would do that for her was the General Hospital, the Cook County of PAP, and a fairly notorious place. Once she was stable on the oxygen, the staff began making arrangements for her to go to the General Hospital. We left.

The next day when we were back at the clinic, we asked one of the doctors how the little girl was doing. “She died in the tap tap on the way to the hospital,” she replied.

We thank God for the progress Emmanual is making and ask this little girl to watch down upon him from heaven.

Wednesday, February 15, 2006

Of Benjamin Franklin and the Elections in Haiti

I am a little over halfway through “Benjamin Franklin: An American Life,” by Walter Isaacson. A marvelous, fast, fascinating read—though it would be difficult to make B. Franklin anything but fascinating—Isaacson weaves together the diverse but related strands of Franklin’s life as a printer, inventor, scientist, newspaperman, writer, charmer, down home philosopher, postmaster, founder of civic groups, statesman, etc., etc. What a guy! Why do I waste so much time when there is important work to be done? Not that Franklin didn’t have a good time, too; he did. He loved his food, wine, and conversations with the ladies and other enlightened people. Anyway, of all the founders, Ben is the most modern and much of what he wrote and thought applies to current events. To whit:

As relations deteriorated between Great Britain and her colonies,“ [Franklin’s] outlook, as usual, was from the perspective of a new middle class: distrustful both of the unwashed mob and of the entrenched elites.”

Haiti presents a modern example of why Franklin’s concerns are merited. Rene Preval is the huge front runner for president in the recently held Haitian elections and the heavy favorite of most of the poor who live in Haiti. After carrying up to 60% of the vote in the initial days after the election, Preval has seen that percentage shrink to under 50%, meaning a runoff election would be necessary. This seems highly suspicious given that blank ballots are being included in the total, lowering Preval’s percentage, and even more damningly, that huge bundles of ballots marked for Preval were found burning in a PAP dump.

What may explain this is that the powerful elite, who with assistance from the U.S., control things in Haiti, don’t want Rene Preval to be the next president of Haiti. In fact, Charles Henri Baker, the light-skinned, third place finisher, with about 6 percent of the vote, voiced their anti-democratic sentiments when he said after the election that in no way should Preval become president.

People have taken to the streets in huge numbers to protest the voting irregularities and likely fraud. They stormed the luxury hotel, the Montana, and frolicked by the pool. Cars and tires have been set aflame, but no one has been hurt in the demonstrations, except a couple of people who were killed by the U.N. soldiers. The protesting people are calling for Preval to be declared the outright winner.

Fortunately, good, old Rene Preval, is troding the middle ground that Ben loved so well. In a Franklinesque statement, Preval declared that while “massive fraud and gross errors had stained the process," order must prevail. "The Haitian people are frustrated. They have a right to be frustrated. And they have the right to protest. But we must respect private property. We must respect the law. We must respect the rights of others.Do not give in to anger. Today, let's conduct politics intelligently, without violence."

Here! Here ! President-elect Preval. Here! Here!

Monday, February 13, 2006

An Ode to Apostolic Christians:

This is another long overdue post. . . One of the reasons that Haitian Hearts has been able to succeed the way it has is because of a community of people affectionately known as the AC’s, or Apostolic Christians. They have supported Haitian children through taking them into their homes, holding fundraisers, visiting them and financially supporting them in Haiti, and helping in a myriad of ways.

The majority of the host families in Illinois have been Apostolic Christian. Emmanual is being cared for by two, loving Apostolic Christian families in the Cleveland area. They have held spaghetti suppers, bake sales, built a house, and helped put on an auction to benefit Haitian Hearts. Anne Wagenbach, served at the coordinator of Haitian Hearts for many years, doing a bang up job of finding host families, helping with medicines, and taking care of a million other details that can make or break a program. More recently, the Apostolic Christian community helped lay Jackson to rest. All their help is given in the most cheerful, gracious manner possible. Often they act like you are doing them the favor for asking them to help.

I have been to a few Apostolic Christian weddings. I think their beliefs are similar to those of mainstream Christian denominations. What I am most impressed with, though, is how they put their faith into action. The fancy word for this is orthopraxy, or right practice. You can tell AC’s are Christian by their actions both in and out of church, as evidenced by their love and care of visiting Haitian children. Their community is an inspiration to me and I know John too. Besides all of this, they all sing well—a capella, no less—are gourmet cooks—I’d like to be hosted in their homes—and are incredibly industrious. I’m currently reading a book about Benjamin Franklin, and although he wasn’t Apostolic Christian, a lot about him from his showing his belief and love for God by helping his fellow man, to his stress on moral virtures, to the amazing amount of stuff he got done in his life reminds me of the AC’s.

Haitian Hearts would not be nearly as successful without the contribution of Apostolic Christians. We are humbled and inspired by them.

Friday, February 10, 2006

Father Jean-Juste Released! Preval Cruising to Haitian Presidency!

Finally, some good news coming out of Haiti. First of all, and I am late in posting this, on Sunday, January 29, the Haitian government put Father Gerard Jean-Juste, accompanied by his American attorney, Bill quickly, on the 11:45 American Airlines flight to Miami! This liberating event occurred after a farcical series of events.

On Saturday, UN troops and Haitian police escorted Father to Canape Vert hospital in PAP. This is the best hospital in Haiti, but still very poor by American standards. We spent an agonizing night there in 2004; the only ventilator in the hospital didn't work. Anyway, Father was taken to Canape Vert because the Haitian government had arranged for two Haitian oncologists to examine him.

This, of course, was weeks after the Haitian government reported that their doctors said Father didn't have cancer, a diagnosis that was hard to defend after Dr. Paul Farmer took some blood from Father to Miami and had it tested, where it showed Father had leukemia. Well, true to Haitian form, the oncologists didn't show up! Maybe they didn't want to get involved in a political case. Maybe they were the ones who said he didn't have cancer. Who knows? Father waited there awhile and said his rosary. When the doctors didn't show, the authorities returned Father to jail and then the next day he was on the plane. Hip! Hip! Hooray! We found out when John called the third American doctor who examined Father a few days prior to his release and found his condition to be deteriorating significantly. She confirmed that he was on the plane.

Father received treatment for pneumonia and leukemia at Jackson Memorial Hospital in Miami. and is now out of the hospital. The Haitian goverment is stating that this is a conditional release and that after Father completes treatment he will have to return to Haiti to "face justice." To face injustice, is more like it, seeing how Father was imprisoned for six months with no credible charges brought against him.

The good news about that scenario is that by the time Father is ready to return to Haiti, a new government will be installed. On Tuesday, February 7, Haiti held elections. As I write this, the vote is still being tallied, but what is known for sure is that the heavy front runner, Rene Preval, is the winner. What's more, he may have garnered more than 50 percent of the vote, which would make him the outright winner of the presidency, avoiding a need for a runoff election in March. I think Preval can be a good bridge between the few but powerful rich and the numerous suffering poor, who often seem to be at odds, with the former having the control and the latter the moral claim for change.

The other good news about the elections, is despite all the difficulties of voting--violence, not enough polling stations, long lines and waits, etc.-- it seems as if the turn out was heavy, which speaks to the Haitian people's desire for democracy.

Father Gerard Jean-Juste may not have had political freedom in Haiti, but we are glad he is receiving the medical care he needs. And after he got out of the Miami hospital, he spoke at a press conference wearing a Rene Preval t-shirt.

Long live Preval! Long live Haiti!
The Cleveland Clinic Redux:

We're back at the Cleveland Clinic where I'm typing these words from The Cleveland Clinic Alumni Library. (BTW, Ohioans seem to like the article "The" in front of their favorite institutions, witness the Clinic and The Ohio State University).

But to the point of the post: I have good news to report, and I'll use John's words to Chris and Hal Nungester in Haiti, who were anxiously awaiting news of Emmanual's surgery, to relay it:

"Would you like some good news today (Feb 8) ?? Emmanuel did GREAT in surgery!! Is that good enough for you?? He smoked through it. They got the hole patched with a dacron patch and his pulmonary pressures came down immediately which is great. His hematocrit is 35!! His preop CXR yesterday is improved and he continues on the the TB meds.

"You guys gave him the big chance that this dude needed. You fed him and hospitalized him and held him and brought him to Ohio, and he knew he was somebody. He would be dead without you.

"If you had a tough day today, which you probably did, think about Emmanuel surrounded by ICU nurses and three sets of families fawning over him and the entire Cleveland Clinic nursing staff loving him. And now he has a chance....Your work in Haiti is extremely hard...but the differences you make will go on for generations after you are gone. Your work is affecting many more lives than just the Haitian kids you take in. Everyone who comes into contact with these kids who have been deprived of things that all kids should have, are changed forever."

Chris and Hal run an orphanage in Port-au-Prince and do heroic work on behalf of the children in their care.

Emmanual is recovering nicely. He had a little temp and a little fluid on his lungs the day after surgery, but these conditions are improving today. He has two wonderful host families in the Cleveland area and a wonderful adoptive family in Washington state.

Dr. Brian Duncan, the surgeon and Dr. Geoff Rosenthal, the cardiologist were practically skipping through the halls today, they are so pleased with how Emmanual did during surgery. Since the time Emmanual came to Cleveland on December 17, he was treated for TB, and he put on three pounds, more than a third of his body weight. He is a very charismatic baby and people are practically fighting over him. John thinks that now, with his heart repaired, he will be eating everything in sight. Everyone will need to guard their plates!

My happiness for Emmanual is somewhat tempered by my black-Irish-thoughts-of-adversity-will-sustain-us-in-these-happy-times kind of thoughts that Jackson would have smoked through surgery too. But perhaps Jackson is doing more than we realize from heaven.

We have two more children who have been accepted by Cleveland Clinic, and we can't wait to get them here.

Monday, February 06, 2006

OSF: A More Controlled Rant:

A couple of posts ago, I went off on OSF St. Francis, for good reason. Those non-Irish Catholics out there may have considered my words and attitude too bitter. Perhaps it was. But Jackson’s life was at stake, and I think it was a time for some bitterness. Let me discuss OSF St. Francis Medical Center in a more considered fashion.

First of all, in 2001, they fired John after he worked 13 years in the emergency department. By all accounts—co-workers, patients, satisfaction reports, awards—he was an outstanding, caring physician. He won numerous awards for his teaching of med students and residents. This excellence was recognized by many, including administrators involved in his firing, one of whom brought his son to the ED and asked for John to put in his stitches. People wanted John to be their doctor because he’s good and they know he cares. His skill has come from decades of intensive studying combined with a touch that I think he was born with. When he was a resident, one of his attending doctors called him “the best diagnostician in Peoria.”

So why was such a good doctor, who incidentally is a devout Catholic who completely takes the mission statements of the Sisters to heart—he still carries a card with the mission statement printed on it around in his wallet—fired? John was always agitating for change in the ED; he wanted things to improve for the patients. The satisfaction rate for the ED was only 33 percent. His agitation culminated in a letter to the hospital administrator, Keith Steffen, in which he discussed his concerns about a shortage of beds for emergency room patients. The night before he wrote the letter, some of his patients had discharged themselves because they were tired of waiting. John offered to meet with Mr. Steffen to discuss ways that the situation might be improved. John copied his supervisors, including Drs. George Hevesey and Rick Miller on this letter.

This letter resulted in John being placed on probation. A little over three months later, he was fired. Lots of ugliness was directed by hospital administrators at John between the letter and his firing. Many big institutions and systems resist change, even if the change is positive. John’s only desire was to improve the functioning of the ED and the hospital. People in responsible positions weren’t interested in this—maybe it would create more work for them, perhaps they didn’t like the problems they were responsible for being pointed out, emergency dept. patients aren't the highest priority.

Lots of people are unjustly fired; they go on about their lives. Physicians have left Peoria because of things OSF has done, like close their mental health unit. It helps to understand that John cares about St. Francis in a way that few of us—at least me—have cared about their work places. He loves St. Francis. These feelings began when he worked there as an orderly when he was 18. In his last year of med school, the only place he listed as a residency choice was, you guessed it, St. Francis. While he worked there, he loved it. He felt that practicing medicine in a Catholic hospital allowed him to align his work with his religious values. Being an emergency room doctor also gave him the flexibility to spend part of the year working in Haiti. He also loved teaching the residents and med students. John is always interested in learning and improving, another trait that makes him such a good physician.

Despite the words of Chris Lofgren at the time of John’s firing that the hospital’s support of Haitian Hearts would continue, such was not the case. Less than a year later, the hospital withdrew support from HH claiming the program owed them a lot of money. People who volunteered for HH raised well over $1,000,000 that went directly to OSF to pay for Haitian children’s medical care. Almost a half million was raised in the year before OSF discontinued its support. Their claims of what was owned were never substantiated by any bills.

OSF can do what it wants. It can discontinue a program and no one can force them to continue. But we can point out the moral discrepancies in their behavior. They are supposed to be a Catholic hospital. If they aren’t going to consider caring for new Haitian patients, don’t they have some kind of moral obligation to care for those pathetically poor Haitians who have already been their patients? In the case of Jackson, a mitral valve that had been repaired at OSF now needed to be replaced. This diagnosis was made in May 2005. John notified OSF and asked them to accept Jackson as a patient. He offered OSF $10,000 for Jackson’s care. OSF refused. In December, when Jackson was so critically ill, John upped the offer to $20,000. A company would donate the heart valve, as they have in other cases. HH is not swimming in money; we have under $50,000 in our account with much of that money earmarked for patients less critically ill than Jackson who have been accepted at other hospitals. What kind of a Catholic hospital turns its back on poor Haitians who were once its patients? Jackson would have had a much better chance at life in May. Furthermore, it is difficult to find hospitals willing to operate on Haitian children who were operated on at another hospital.

OSF would say that they no longer want to work with John because of his efforts to point out the flaws of the hospital, regarding HH and its role in the emergency response services in Peoria. But shouldn’t their concern be Jackson, their poor, Haitian patient? In my opinion, Jackson died in part because OSF refused to accept him. And I believe they had a moral obligation to do so.

So again, what kind of Catholic hospital fires a doctor like John, discontinues a program like Haitian Hearts, a program, which by the way, benefited the hospital with excellent PR and patients who taught medical staff an enormous amount, and refuses a former patient like Jackson? What kind of a Catholic hospital? A nominally Catholic hospital. This phenomenon is not limited to OSF. Across the country, Catholic hospitals that were formerly run by Catholic sisters have been taken over by large companies and secular administrators. These hospitals have become so large and complicated to run that the religious orders have largely ceded control of the institutions to people who might not have the mission uppermost in their minds—or anywhere in their minds, except in complying with the law and garnering good publicity. This has happened at OSF in what I believe is a particularly toxic fashion.

Part of the problem is how large OSF is and how much power it wields in Peoria and Illinois. It is a $1.6 billion organization and the second largest employer in Peoria. People are very hesitant to be critical of them. And without naming names, part of the problem is some of the people they have in key positions. Another part of the problem is the large salaries that the administrators receive. Having attended Catholic schools and worked at a Catholic social agency, I have spent a lot of time thinking about what makes an organization Catholic. Is it a crucifix hanging in each room? Retreats during which the life of St. Francis is described? These are nice, but mere window dressing. I am convinced that an integral part of what makes an organization Catholic is sacrifice, even sacrifice that hurts. Where is there any evidence of sacrifice at St. Francis? Do employees make less money there? Are their poor patients treated as well as or better than rich patients? Do those in charge act like servant leaders, as Jesus did? Is ethical behavior on the part of employees encouraged and supported? How is OSF any different than its secular counterparts? I don’t think that it is, except where the law compels it to be.

I tell John that OSF isn’t the place he thought it was. But he knows there is much that is good at OSF. He is sad to see the place railroaded by a few who don’t have patients and the mission as their first interests. We can’t force OSF to change; it is too big and too powerful and others would have to join the effort. But we can continue to point out where they fall morally short. We can and will continue speaking truth to power.

Jackson shouldn’t have died.

Thursday, February 02, 2006

The Year of Magical Thinking: A Book Review

When I flew home from Cleveland at the end of December, I bought “The Year of Magical Thinking” by Joan Didion at the Cleveland airport. As I already have so many books, I felt slightly guilty about this purchase. I brought the book to the check out counter and the clerk commented, “This is really a good book.” I sheepishly replied that I really should wait and get it at the library. She said, “Sometimes you just have to buy it.”

This book, which recounts the death of the author’s husband from a heart attack, at the same time their only child is hospitalized in critical care with an unknown disease, and the aftermath, is, of course, THE memoir of 2005. And for good reason.

I began reading it on the plane from Cleveland. The date was December 30, 2005. The author’s husband, writer John Gregory Dunne, died on December 30, 2003. My beloved grandpa died on December 30, 1984. I was a little freaked out by these coincidences, but kept reading anyway. I’ve decided I don’t believe in bad omens, only good ones as befits the world view of someone who’s had a charmed life. For example, I’m typing these words on a flight to Atlanta. Who should show up at the Bloomington airport this morning but my cousin Jay, who is also making his way to Bradenton/Sarasota. So now I know the plane won’t crash. Talk about magical thinking.

When I got home, after having only read the first 30 pages, I lent the book to my mom, who found it depressing—“She (Didion) doesn’t seem to have any faith,” (she does, but in geology—the inevitability of earthquakes, mudslides and tsunamis—and not in God) and didn’t resume reading it until I was back in Cleveland for the third time when Jackson died. I have to say that it was the perfect book to read while mourning Jackson. The grief and sadness are as tangible as the printed pages. “This is my attempt to make sense of the period that followed (her husband’s death), weeks and then months that cut lose any fixed idea I had ever had about death, about illness, about marriage and children and memory, about grief, about the ways in which people do and do not deal with the fact that life ends, about the shallowness of sanity, about life itself.”

Jackson died just past midnight on Saturday, January 21. We continued to hang out at The Clinic for several days: John attended the autopsy meetings, we met with the genuinely compassionate family liaisons who helped us make arrangements for the discharge of Jackson’s body, we picked up his belongings, we went to the medical library and bought some used books at a buck a piece, we talked with funeral directors. I would sit in the comfortable, airy waiting lounge near the chapel with the lively classical music, waiting for John and reading the book.

Didion so precisely describes her husband’s death and her emotional state—details, details, I always told my composition students—and backs them both up with research ranging from an article on sudden cardiac death in the Journal of American Medicine to a section on bereavement in a 1922 Emily Post book. As Didion said, “In time of trouble, I had been trained since childhood read, learn, work it up, go to the literature. Information was control.” I’ve listened to John talk enough about medical situations that I could appreciate how right Didion got her descriptions, which I would read to him to verify and also to make him diagnose what was being described.

In 2000, my uncle Joe died in Manhattan also of sudden cardiac death. When my dad and I went to NYC to make arrangements, I remember the need I had to go to the restaurant to talk with those who were there when he died, to recreate what had happened. Joan Didion has that compulsion too, even though she was present when her husband had his heart attack. For Didion it was about relieving guilt. Was there something she could have done to save her husband? I think that’s one of the reasons John went to Jackson’s autopsy: he wanted to know that he had diagnosed and treated Jackson properly. This was confirmed. The main cause of Jackson’s death will likely be listed as a stenotic (tight) mitral valve. John and I both feel guilty for other reasons, though. John wishes he had never taken Jackson back to Haiti. I wish I had spent more time with Jackson the last two months. I could have sat by his bed more.

As time went on, I felt like we were haunting the clinic, a spectral presence. I saw the doctor who would be Jackson’s surgeon four times. The Clinic is huge. Why did I keep seeing him? Once he saw me, and acknowledged me with an embarrassed-looking nod. Did he remember who I was? What were his feelings about Jackson’s death? Maybe that’s why I felt like we were haunting the place: our guy died. He was a medical failure. What doctor wants to remember/be associated with that? “We’ve done all we can. We’re sorry he didn’t make it. He’s been gone four days. It’s time for you to leave now.” Actually, we bumped into two of Jackson’s nurses who expressed the most heartfelt sympathy and said they would always remember Jackson.

Didion describes a thought process she called “the vortex.” She would be in a familiar place or pass a landmark that would trigger a memory. This memory would inexorably lead to others, which would either take her to a comforting place, where she could forget that her life as she knew it was in shambles or bring her to a place that accentuated her pain. I feel so bad about Jackson; sometimes I have to think about something else and I force myself into a vortex having nothing to do with Haiti or death.

I have a strong faith in God and heaven, so in that way my thinking is different than Didion’s. But for expressing the sadness, difficulty, and insanity that accompanies death “The Year of Magical Thinking” has been the perfect accompaniment to my mode of thinking these past days.

A note about these book reviews: a couple of Haiti trips ago, I read the first volume of George Orwell’s collected works. Orwell reviewed many books. Most of these reviews were an excuse for him to write about what he wanted to write about, somehow linking his subject matter with the book. My reviews will likely follow a similar pattern.