Levi's heart

Leaving on a jet plane

2011-11-22T10:41:00.005-05:00

It's hard to believe—even for me—that in just a week Levi will undergo open heart surgery. You'd never guess he's sick.

Since his last two surgeries in 2008, we've spent much time and energy reigning Levi in. He's the first one to get up in the morning and, if it were up to him, would be the last to sleep at night. He spins through each day like a tornado, leaving behind a wake of toys, half-eaten sandwiches, cups of water and pockets-full of treasures. His hands are always busy as is his mouth, spinning tales about friends—real and imagined—and asking a string of questions to which he usually already knows the answers. He never misses an opportunity to speak to a stranger, touch an object, write his name on an unblemished surface, push a boundary, dispense a hug, plant a kiss, or issue a spontaneous, "I love you." He is, in short—and he is that too—a force of nature.

And yet on Tuesday at 5:40 a.m., Levi, his father and I will board a Delta puddle jumper bound for Philadelphia and its children's hospital—rather unsolicitously known as CHOP—for a procedure of as-yet unknown proportions. Here are the problems the surgeon will face:

• Double outlet right ventricle: in other words, instead of the major arteries exiting the right and left ventricles of the heart, they both come from the right side
• A large, malaligned ventricular septal defect (VSD): he has a hole between the left and right ventricles that's huge and in the wrong place—not that there's a "right" place for it, I suppose.
• Transposition of the great arteries: the pulmonary and aortic arteries are backwards, meaning that oxygen-poor blood gets pumped into the rest of his body.

Three-and-a-half years ago, shortly after Levi came home to us, a local surgeon patched the VSD. However, because of its location, the patch itself interferes with the blood flow inside the heart. Because he's a growing kid, Levi's doctors here have been monitoring these pressures closely, and a couple of weeks ago he hit the magic number telling us it's time go back in.

At CHOP, the surgeon will determine whether the patch can be adequately modified or if greater measures will be required. The cardiologist I've talked with there, Dr. Bird, has mentioned the possibility of a procedure known as Ross-Konno, which would essentially re-plumb Levi's heart, replacing the aortic valve with the pulmonary valve and the aortic valve with a transplant, or allograft. Although used primarily in instances of valve disease—Levi's valves work perfectly well—this procedure can also be a solution when the anatomy of the heart defects prevent simpler fixes.

We're voting for option #1, but we will see.

Levi's (wonderful) new cardiologist feels confident that we've chosen the right place for the surgery. The surgeon at CHOP, Dr. Spray, specializes in this type of heart problem. If all goes well we could be home within a week. We're nervous, of course, but feel confident he's in good hands. CHOP is the number two pediatric cardiac center in the country. And, more importantly, Levi has a Father who loves him even more than we do.

Stay tuned...

Before Christmas

2011-11-04T10:34:00.002-04:00

We knew it was coming. They are hoping to get him soon. Pressures have changed in the heart and we will be heading to Philadelphia to get some work done on his previous repair.

Pacemaker 2.0

2009-06-24T11:21:00.003-04:00

The pacemaker went in without a hitch. The last one had worked it's way down into the intestines so they placed this one on the surface making it appear much larger.

Pacemaker

2009-06-08T15:54:00.002-04:00

The pacemaker that was to last nine years is do to be replaced tomorrow (6/9/9). This is not a surprise, the scar tissue has been impeding the current from day one.

We also have discovered recently that as he is growing the patch in the heart is creating an uneven pressure gradient. The cardiologist is hopeful we can make it 5 years with before we need to go back in but that may be optimistic, only time will tell. Larisa had a long conversation with the surgeon today and the short of it is that we are in uncharted territory. He will continue to have ecocardiograms evey 8-12 weeks.

Overall Levi is doing very well and growing quickly. He just turned 5, here he is at his 5th B-Day party. You can see highligts here.

http://vimeo.com/4719464

Results

2009-04-21T09:59:00.002-04:00

Our hopes were confirmed in regards to the pulmonary hypertension. His pressures were normal, which is great news. It looks as though at some point between now and adulthood they will have to open him up again to enlarge the patch, as it is still creating some obstruction. The Dr. is hoping we can make it five more years before this needs to be addressed. Overall this is a good report and Levi has been doing well over the last few months gaining weight and height.

They've started

2009-04-21T08:38:00.001-04:00

They took Levi back, they should be finished in an hour or two.

Heart Cath

2009-03-27T10:11:00.002-04:00

Levi had a routine checkup today. His oxygen levels were the best yet at 100%. His pacemaker is due for replacement though and they want to do a heart cath before they go in. This has been planned from the beginning but we request your prayers. This will give us a better idea of what procedures may lie ahead.

2009-03-08T22:57:00.002-04:00

Settling in

2009-01-27T19:16:00.003-05:00

Well, after four days of recovering from jet lag and getting used to the fact that it's still winter here, things are starting to seem, well, normal.

I know there will likely be some ups and downs, but Andrew seems to be fitting in remarkably well. There is general squirming and slapping and an uptake in neediness as everyone scoots around to fit in the latest member of the family. Overall, however, comes the sigh of relief in a process and family complete after weeks of absences and lives in the balance.

For his part, Andrew is rambunctious, curious and affectionate. He's quickly made himself comfortable squealing down our driveway on four wheels, climbing trees and cozying up to the dog and cat. He's adopted his brothers toys, finds cooking endlessly fascinating and, tonight, ate broccoli for the first time with relish—"they are trees for eating," he announced to the rest of the tribe.

"Relish" is actually a good word to describe Andrew's attitude toward life thus far. All seems action and adventure. After more than five years behind the walls of Welcome Home, everything is discovery and delight. Short on English exclamations, he resorts to grunts and cries or, failing that, bursts into a torrent of his hybrid Lusoga/Lugandan.

So, yes the house is noisier, yes the laundry piles up faster, yes there are twice as many requests for apples cut, cups filled with water and shoe laces tied. But we have Andrew. And it's fun.

Home

2009-01-23T18:19:00.000-05:00

Thursday's the day

2009-01-20T13:24:00.002-05:00

God willing, Andrew and Larisa will be heading home Thursday. Larisa received the DHL from the states just in time. Another day and she would have had to delay her flight. They will be touching down in Atlanta this Friday at 1. Thanks for all of your prayers.

2009-01-16T13:19:00.000-05:00

The electricity went out last night for the first time since I've been here. With a flash and a fade and a brief chorus of "aaaahs" that could be heard around the neighborhood, we were plunged into darkness. Pretty amazing to me that we made it a week without a hiccup.

Andrew was in the bath and got a little nervous in the dark. With our fan out, you could also hear every baby cry and dog bark within a half a kilometer, so going to sleep was a little more daunting than usual.

We've been doing well, Andrew and I, but the transition from the orphanage has been an adjustment for all the adoptive families. Andrew's five, and there are three other four-year-olds that are now staying at Ebenezer. Needless to say there has been lots of boundary testing and not a few fits. We are all learning very quickly that you have to be as tough as the mums at the orphanage or you're not going to survive. But, hopefully, as a result, by the time we board our respective planes for home we will be the parents of reasonably orderly, polite and manageable children. Please us and the kids in your prayers. This is a big change for everyone.

Well, because of the MLK holiday Monday, I won't be going to the embassy until Tuesday (the papers I need have not arrived yet anyway) so will be cutting it pretty close on my return. In addition, I don't know if I mentioned this prior, but Andrew's aunt has gone north and her return is uncertain. Such is the way things go. Matthew's definitely ready for me to come home, so we're praying that all will be completed on schedule--even if it is in the nick of time.

Other than that, Uganda is warm and lovely, I'm falling in love with Andrew and the power outage last night gave me the most amazing view of a sky, thickly clumped with stars.

God is good.

On Schedule

2009-01-12T15:47:00.001-05:00

We're going to be making an extra trip to the embassy this week or next. Matt had to madly scramble this morning to DHL some forms we'd neglected to complete, and we're also going to have to tote Andrew's aunt back to Kampala to prove to Mr. Flook's satisfaction that we're legit.

After that, it should only take a couple of days to get the visas, so we'll probably get out right on schedule.

It was a long day with Andrew. Up before 5 a.m.--I got about three hours of sleep myself, still dealing with the time change. He's is full of energy and decided to begin testing me in public places--particularly at one point during a tense exchange with Flook. Anyway, we survived, and it took him all of 30 seconds to fall asleep in what is now our room.

I learned today that Andrew's father came from western Uganda and his mother came from the north, which explains his broader mouth and upturned nose. He's a sweetie, and I think a good night of rest and a few days of a new routine will help us all settle in. I think his primary frustration, other than the fact that I'm not his daddy, is language. When he has something he really wants to tell me, he bursts into Lusoga (at least that's what I'm told he's speaking). And he's even started telling me the local words for things like rooster and napkin or fork or something like that at dinner. Anyway, I've decided to learn at least a little Lugandan (similar to Lasoga) in order to really get his attention when I need him to do something. Will let you know how that goes.

Me and Andrew

2009-01-10T08:34:00.001-05:00

Hey,
Got a very sweet boy sitting on my lap right now. We're full of Miranda cherry soda and an ice cream cone. He knew right where to go when we got the the source.

When I went to the orphanage this morning, he ran right over to me and grabbed my hand to go sit on the swing. I gave him a little toy airplane I bought. He seems to just like to be with me. I'm going to buy a Lusoga book so I can talk to him some more, but he's proud of the English words he knows and keeps asking about the names of different things. He's really bright. Although we're probably killing him with all this sugar. He's got a five-year deficit to make up for though.

I saw Dada. She is a sweetie and wanted to come on the walk with us. I talked with Rose for a while and she said you were very "annoyed" when you were there about the process. That made me laugh. She also said Andrew climbed to the top of the roof at the orphanage. Well. Must return Andrew for lunch. I think he is ready to come home with me, though. Maybe by tomorrow night.

Love you, call me later. Happy Sabbath. God is good.

Larisa

Arrival

2009-01-09T14:03:00.003-05:00

Larisa has arrived safely. She had a nice visit with Andrew this afternoon and is settling in. She will be going to the Embassy Monday. William thanks she will be ready come home in 3-5 days (from Monday). We hope this turns out to be the case. Please keep us in your prayers.

Two other families just arrived. All the adoptees have to be heard as separate cases now so some of them will not have hearings till the 21st.

This ones for believing: January 7

2009-01-01T10:15:00.002-05:00

2008-12-17T08:56:00.002-05:00

2008-12-16T10:16:00.000-05:00

January 12

2008-12-16T10:01:00.002-05:00

It appears that things are in order for Larisa to depart for Uganda on January 10 (arrive on the 12th) to finalize things and bring Andrew home. Keep us in your prayers. If all goes well it should be a short trip, 10 days or less.

It's a go. We think.

2008-12-16T09:02:00.002-05:00

From garbled and broken communication this morning it appears we got the verbal ruling that we were hoping for today. We will know for sure later this afternoon.

Wait till next year

2008-12-05T05:40:00.002-05:00

Post from Matthew this morning:

After three weeks it appears that we are not going to get any breaks from our judge. She won't make a decision on our case until the 16th. If everything were to go perfect I could wait it out and be home with Andrew for Christmas. But that would mean completing in three days what it has taken at least a week to accomplish in the past, and flights out around Christmas time can be uncertain. If we were to get delayed on any aspect I would be here till mid January. That is not going to work.

So, Larisa is planning to come over very early next year. Hopefully things should be in order by then, and it will be a brief trip. Keep us in your prayers. Thanks.

Still waiting

2008-12-04T10:52:00.002-05:00

Well, after a day of waiting to hear from the attorney there is nothing to report. Apparently he never got to see the judge today. We're evaluating our options at this point. Please keep the situation in prayer.

From Matthew this a.m.

2008-12-03T08:15:00.000-05:00

Lunch:
I went to a "western style" deli today. Ordered a nice plate of lasagna and sat down to enjoy. Right out the window a young woman sifted through the dumpster looking for something to eat. The name of the deli was "Indulge."

Mistaken Identity:
On more than one occasion I have been mistaken for Jesse. He apparently had made quite a name for himself by distributing his surplus "Obama '08" bumper stickers to the locals. It is not uncommon to see a boda-boda drive by now with the "O" logo on the mud flap. A young lady stopped me and said, "I never got my Obama sticker." When I told her I was not the one handing them out, I am not sure she believed me. All mzungus look alike, but some more than others.

Please Pray:
Thursday morning at 9 (1 a.m. est) our attorney meets with the judge. If we don't get an early ruling it looks like I will be headed back alone. This is not ideal for me and not at all ideal for Andrew. Please pray for us.

A son

2008-12-01T19:35:00.004-05:00

Today Matthew took Andrew back to the orphanage after a day spent exploring in the garden, climbing obstacles he was not supposed to, chewing on strange berries and splashing in the bathtub. The moms commented on how much he had changed since Matt had come. Andrew always used to look at the ground, they said. He is so much happier now.

Whatever happens in this uncertain process, little Andrew has a daddy. He doesn't have to hang his head anymore.

Alone

2008-11-30T10:41:00.001-05:00

Post from Matthew this a.m.:

The group is gone. It's just me, and Andrew. He has been really sweet. He likes coming over to the guest house and seems to be a well behaved little guy. His English is poor but he is a fun kid. A little sensitive and moody so he should fit right in.

Wednesday:

That is the day we are supposed to really know what and when things are going to happen. Keep us in your prayers.

Monkeys:

We took what was a fairly difficult hike yesterday through a rain forest. 3-4 miles of hilly terrain in search of red-tailed monkeys. We caught an occasional glimpse but no great sitings. When we got back to the van, drenched in sweat there was a troop of about 10-20 a few yards from where we were parked. They had babies and juveniles and did all the cool monkey things, like eating fleas off of eachother and leaping from tree to tree.

Out of place:

We took a "traditional" boat tour. "Traditional" meaning that there were no life vest and the guy running the engine spent a fair amount of time bailing water out of the boat. We stopped by a fishing village. We met a couple of Israelis who had been there for six months building a sailboat to circumnavigate lake Victoria (the largest lake in the world). The design seemed a little bit ill conceived. They placed a large, heavy cabin at the very front of the boat.

Thanksgiving

2008-11-27T08:18:00.004-05:00

The trip has been a real blessing so far. After five days of meetings--100 people or so crammed into a tiny church--nine people came forward to study for baptism at the final call. There has been just a real sense of the Holy Spirit's working in that church, and we hope the relationship between the Lenoir City Church and the Chomanga SDA church will not end here.

Here's more details on the past couple of days from Matthew's emails:

"Before the meetings I had a chance to visit Timothy's grandmother. I enjoyed some roasted peanuts and fresh sugar cane.

"We visited a home for disabled children. It was a difficult experience. Several of the disabled were there as a result of malaria, the stories were all tragic.

"Jesse has had a bug but seems to be doing better.

"Today we visited the largest sugar cane plantation in Africa. We are not sure of the mileage but it has 52 villages on-site. It was a disturbing picture of what the pre-civil war South may have looked like. They import workers from long distances so they cannot afford to leave. The conditions were as you would expect.

"Andrew is doing well. I had to keep him from crawling into a chicken coup in the village the other day. He likes ice cream and orange Fanta. We are hoping to make progress early next week. Please keep us in your prayers that things will go according to God's plans."

Today is a day to be thankful. We have been given so much. Grace has been poured out on us from heaven. And there is no greater blessing than passing on what we have been given to the people God puts into our lives. In a world of fear and darkness and sin, it is so good to know that God's love and light are greater. It is so good to be in His care.

Happy Thanksgiving.

Note from Jinja

2008-11-24T06:14:00.003-05:00

We have been day to day on Andrew but it now appears that it will be next Tuesday before we can hope to see any real movement. The judge is out of town until then. When she returns, we'll call each day to see if she will make a ruling before Dec. 16 on our case. As usual, it's wait and see.

The group arrived Friday and everyone is enjoying themselves. Jesse has a slight fever and spent this morning in bed but is feeling a bit better now.

We took a tour of the Iganga SDA school this morning, and they are trying to start some new education programs there that incorporate learning a trade into the curriculum. It seems a really thoughtful idea that would go a long way in addressing some of the issues we see here of so many with lots of schooling and no work.

Our meetings in the village are going well and quite a few people have been coming. It is an experience to be interacting with people whose lives seem so different than ours. Their homes have no power or road access, in many cases they are mud and thatch. But, despite all that it's amazing how much we have in common.

Getting busy

2008-11-23T11:06:00.003-05:00

Well, after one night of sleep, the mission group got right to work visiting the Welcome Home orphanage after attending church Sabbath morning and then holding the first of five evangelistic meetings in the afternoon. (To all the Lenoir City church members, my apologies -- the meetings actually started Sabbath afternoon.)

The first was a bit rough, but the group rallied, put in lots of prayer time and today's second meeting went really well. They are all having a big time. The group met Andrew yesterday afternoon, and he especially took to my dad, following him around the orphanage grounds.

I'm going to try to get them to send some photos soon. Please keep this week in your prayers, especially the meetings.

Day in court

2008-11-21T10:21:00.003-05:00

Well, we've been busy on both sides of the ocean and haven't been keeping up with the posts. Matthew went to court yesterday morning with Andrew. He got quite a grilling. Amog the accusations were that we didn't have enough income, that the five children we already had is a big family even by Ugandan standards, that we were trafficking children, etc. Matt left the hearing pretty discouraged. The attorney, on the other hand, felt things went quite well. There's the Ugandan court system for you.

The judge said she would give a ruling on Dec. 16. We were hoping Matthew could come home before then. It will take about a week after the ruling to get Andrew's passport and visa. But the attorney thinks there's a good chance she'll make a decision sooner than that. Nonetheless, we're preparing for the long haul. Our biggest concern is that everything be complete in time for Matt and Andrew to come home by Christmas, because everything in Uganda shuts down for a couple of weeks during the holidays.

Matthew was feeling better today because company had arrived. A group from our church, along with my Dad, will spend the next eight days in Jinja volunteering at Andrew's orphanage, conducting a series of meetings, visiting schools and doing some medical work. They showed up exhausted after a 48 hour trip (they spent one night in Addis Ababa, Ethiopia), but excited.

Will keep you posted on their activities. Please keep all of us in your prayers.

Bicycle built for three

2008-11-17T05:02:00.002-05:00

Andrew, Steven (another boy at the home) and I took a ride on one of Welcome Home's new bikes. With one wheel in the back, 2 in the front and a large box for passengers we garnered quite a bit of attention. Speaking of bikes, I met a couple who were biking from Addis Ababa to Capetown yesterday. They hope to be done in March or so. They are raising money for a hospital in Ethiopia.

Andrew is really getting attached quickly, much moreso than John or Levi did. I stepped into the office at the home yesterday and when I came out he was standing in the hall with tears on his cheeks. I worry about him through this process as it can be a bit bumpy. We hope to confirm our court appearance today. Please keep us in your pyayers.

The rest of the group will be coming over Wednesday. They are in for quite a trip. I think they will enjoy it.

Getting settled

2008-11-16T07:22:00.002-05:00

Post from Matthew this morning:

Had nice day yesterday. Visited the village church where we will be having some meetings next week. There we were, in an African village, dirt floor, no glass in the windows, crude wood benches and they started the service with a "mission" story. That seemed a bit ironic.

Had a great afternoon with Andrew, he is a sweet kid. His english is not very good, and he has a real aptitude for "destroying" things I have been told. He is a creative kid who loves to draw. He finds pieces of brick and charcoal and works on the pavement.

Hope to see some movement tomorrow in regards to proceedings.

We had a nice potluck today. Me and about 10 kids who accosted me on the street this morning. I bought a couple of loaves of bread and peanut butter and me and one of the older kids (Moses) made an assembly line while they waited patiently. They were disturbed by the fact that a few drops of peanut butter were wasted when I dripped them in the dirt. One of our goals while here is to try to find some opportunity for these kids. We have some ideas but nothing solid yet.

Also, had a chance to visit Tim's aunt and sister this morning. They are doing well.

Keep us in your prayers.

Arrival

2008-11-15T05:42:00.004-05:00

Matthew can't post from Uganda, so I'll be filling in from time to time on his progress.

He arrived in Kampala yesterday afternoon and visited the attorney's office. There is as yet no court date for Andrew's case, so please keep this in your prayers. The judge wants to reschedule for December, but they are hoping to find a different judge to hear them on Monday or Wednesday.

This morning Matthew went to see Andrew. He was wary (and according to the house moms, a "very bad boy,") but Matthew said Andrew sat right next to him and watched our family movies on the iPod over and over again. Pretty soon, he'll be in them.

What's Next.

2008-11-11T16:43:00.002-05:00

Andrew.

On Wednesday, November 12 I set out for Uganda. God willing, I will not be returning alone.

Please keep us in your prayers.

Levi's 4

2008-05-19T11:36:00.001-04:00

Our Life (tiil now)

2008-04-12T07:58:00.003-04:00

Check-up

2008-03-29T14:12:00.005-04:00

Well, we've been bumping along the last couple of weeks. After all the excitement and drama of the hospital it's me that has been crashing, so I've not had much energy to live life and keep up the blog. But it finally feels like things are returning to normal.

Last week, however, wasn't the best for Levi. He would periodically start crying and grabbing his chest, his appetite lagged and he was lethargic. Thursday was his regular follow-up appointment with the cardiologist, and we discovered that in the process of his recovery his pacemaker hasn't been doing the job. It was periodically dropping from his regular heart-rate, set by his atrium, at about 110-120 beats per minute to 60. They called the pacemaker rep in a hurry, he changed the settings, and Levi has been a completely different kid ever since. He literally got off my lap after his pacemaker interrogation and started running around, laughing, talking, yelling. He is now as energetic as he was before surgery.

Prayer request
I have a prayer request for the blogosphere. One of our church members requested prayer for a friend of his daughter's in Mexico. She is seven years old, and she preaches at her church. She has been diagnosed with bone cancer. We have a Spanish-speaking congregation who has prayed for Levi and knows his story. Jesus (the church member) asked that you please remember Diana Laura Golisia in your prayers.

Zoo

2008-03-24T10:11:00.002-04:00

Evonne

2008-03-13T21:25:00.003-04:00

This is Evonne. She lives in Wisconsin, and came from the same orphanage as Levi a couple of years ago. She has cerebral palsy, and is having a really tough time. Her mother, Cheryl, describes her struggles in an excerpt from an email she wrote:

"First, her seizures have become both more frequent and more powerful. They are no longer stopping when her emergency seizure medication is administered. Her last large seizure lasted several hours, while in the hospital's emergency room, and ended with pneumonia from aspirating fluid into her lungs. The seizure medication they have since added to the regime has helped. However, it is fairly toxic and the doctors want her on it for no more than 2 months. ... Our prayer is that a replacement drug at the end of the 2 month period will be both available and effective.

The second prayer request would be for her immune system to be strengthened. She has been uncomfortable and ill, with very little break, since last July. She seems to be wearing down, bouncing back more slowly with each seizure or illness. We pray for healing so she can get strong.

Please add Evonne to your prayer list.

Cabin Fever

2008-03-09T12:40:00.007-04:00

Levi and John meet their cousins, Caj and Blu.

2008-03-08T10:08:00.002-05:00

I'm sitting here at my dining room table watching our first real snowfall of the winter drift down outside the window. The dog is sleeping on one end of the couch and Levi is sitting at the other, lacing my green knitted scarf through his fingers.

Since we've gotten home from the hospital, everything has been a whirlwind of going back to work, taking care of Levi, trying not to neglect the rest of our children, catching what never seems like enough sleep. It's a lot of work, getting back to normal.

But today I get to stop—toys still scattered around the house, a sink full of dirty dishes—and just watch and be. It is a day to remember how incredible the past three weeks have been, how wonderful it is to be on the other side, how blessed I am to have my family, my son.

The snow, this day, the life I have been privileged to lead ... it is a gift, a miracle.

2008-03-07T12:49:00.003-05:00

Took Levi for the first of many follow-up visits to Dr. Sharma today. Everything looks good. Dr. Sharma said his heart wasn't functioning quite as well as he'd like to see, but that is probably a result of the pacemaker and his body continuing to heal and that hopefully everything will settle out over time. He added a new drug to the regimine—we're getting pretty good at this—and sent us home to keep getting better.

Levi put on a real show, hamming it up for everybody. When the x-ray tech at the hospital strapped him to the board for a chest x-ray and told him to smile for his picture, Levi fussed a little at first, then turned and gave a big goofy grin. The past couple days he's seemed a lot more himself, being silly and cracking jokes. His voice is starting to come back too, although it still isn't much more than a hoarse whisper. He has periodic meltdowns and his energy level isn't that high yet, but he definitely is a far cry from where he was a week ago.

This weekend we're having a celebration of his recovery with family who is in from out of town, and we'll try to get some photos to post.

Prayer request

2008-03-05T17:47:00.002-05:00

Mandy Sydo, who runs Welcome Home, has requested prayer for two children at the orphanage who are really ill. One is a baby rescued from a pit latrine a couple of months ago who suddenly started having seizures and a lot of pain with swelling on the soft spot on top of his head. The second is a new baby who just came to the orphanage, one month old and severely malnourished. He was immediately admitted to the hospital.

Thank you.

Throwing out an idea

2008-03-04T05:27:00.010-05:00

The past three weeks have been extraordinary.

They began with a bouncy little boy heading to the hospital to undergo a serious but routine heart procedure. They ended with Levi coming home, a little less bouncy, but future bright. In between was a case gone wrong, a death sentence, a lot of second opinions, another surgery and a recovery that, I believe, was miraculous.

The future isn't exactly a blank check. There will be more visits to the cardiologist, more tests and constant vigilance. A big question mark still hangs over Levi's lungs. But, we take the events of the past week (his quick recovery and the cautiously optimistic prognosis of the medical professionals) as a promise for what's ahead.

So what's next?

Even though our focus and your focus has been on Levi the past three weeks, it seems like what has happened is much larger than him and us. We have been thinking about ways this community could continue to affect the lives of, hopefully, many more.

Here is what we're mulling.

In Uganda, where Levi was born, there are a large number of sick and disabled children who now do not get the care and medical attention they need. Although numerous organizations have started traditional orphanages there (which is a tremendous need as well) there are many children who live with birth defects or illnesses, and who need either full-time or part-time care as well as medical attention, procedures and devices such as wheelchairs and prosthetics. In Africa, the disabled are often considered outcasts, so although in America they would be able to become contributing members of society, their futures in Uganda can be pretty bleak.

In conjunction with the orphanage that Levi (and three of his siblings) came from, Welcome Home Africa, we are considering laying plans to open a home and day care center for sick and disabled Ugandan children. We are working right now with Mandy Sydo, who runs Welcome Home, to pull together information about the finances and organization needed to open the home. We would also hope to coordinate some regular mission trips to address medical and other needs of the kids there.

Although this is still definitely a work in progress, we wanted to put word out so that you can begin praying and, hopefully, thinking about getting otherwise involved. Please email me at brassl@charter.net, if you have specific questions or want to be personally notified of developments along the way.

This is definitely not the end of this blog. We will continue to post Levi's progress and, hopefully, there will soon be others just like him to add to your prayer list. In fact, we hope this is just the beginning.

Open Heart

2008-03-03T23:40:00.003-05:00

We are home!!!

2008-03-03T15:38:00.002-05:00

Photos and video to come. And we welcome a new little cousin into the world. Lily Jane Brass, Matt's brother's daughter, was born at 2:07 p.m. today, one week past her due date but exactly the hour we were bringing Levi home from the hospital. God's timing is perfect.

Wireless

2008-03-02T17:29:00.003-05:00

They took Levi off his monitors today. No more cables, probes or wires. They say they are not necessary in the last 24 hours. That's right, if all goes well we will be headed home tomorrow. He is still not ready to walk on his own but he is eating well and his vitals all look good.

Larisa had a good conversation with one of the cardiologists this morning. He feels that Levi has responded very well to the procedure and while nothing is certain he says it bodes well for his longterm prognosis.

On another note, a friend of ours, Betty, has just been admitted to the hospital with some worrisome symptoms. Also, Tessa (a newborn who has been here 3 weeks longer than we have) just took a turn for the worse. We ask for your prayers for these two.

Thanks so much for all the support, prayers and various gifts. We will let you know how things go at home.

2008-03-01T22:29:00.003-05:00

Little bit of a bumpy night Friday. Levi pulled out his feeding tube part way and had various other interruptions to his (and dad's) sleep. Got him on a sedative tonight to try to avoid a repeat. The big success, after two solid days of neither eating or drinking, was a sudden craving for rice and apple juice. This came shortly after a visit from his sister and two brothers, which cheered Levi up considerably and apparently made him remember he does want to go home after all.

2008-02-29T18:29:00.001-05:00

They line them up, beds, machines and little faces toward the nurses' station: the gunshot wound, the baby heart, the car accident, the skull fracture. The names and stories change, the theme does not.

We are not alone.

Within a few feet of me are a half dozen lives stopped short by the unexpected, the unacceptable. And connected to those lives are all the families and friends, living life as usual until the phone call, the heart-stopping trip to the hospital, the words "this is more serious than we thought."

This blog is not meant to be a soliloquy on our experience as if it were somehow extraordinary or unique. If nothing else, the past two-and-a-half weeks have reminded me how amazingly ordinary we are. The most heart-wrenching stories involve children, of course. They're not supposed to suffer. They're not supposed to die. But all of us will face it, sickness, death—in our families and, inevitably, in ourselves.

Some of us are successful at postponing or denying the inevitable. But two weeks in the pediatric ICU rips off all the blinders . See parents return here to honor anniversaries, to take comfort in the conversation of nurses who cared for their children in the final days. Hear stories of weeks spent comatose from car accidents, of repeated hospital stays and lives shortened by birth defects, of tiny babies who have never known the quiet of their nursery cribs. This is not how it is supposed to be.

So, in the face of this inevitability, what is there besides repression, denial or complete despair?

I admit, I come to this question with biases of my own. I believe in God. My faith has shaped me. Without it, my family, my life, my plans for the future—nothing looks the same. Given this disclaimer, my faith had never truly met this test. To be told your child will die. To look ahead and not to know. To look back at everything you thought was providence and promise and to wonder, is it all for nothing? Is this what he has come for?

These are inevitable questions, no matter what the age—whether we face death ourselves or in those we love. In such moments, perhaps really only then, do we realize our futility. We are grass. We are dust.

So, in this time, what does faith supply?

All I know is my experience. And what I know is that I have not so much clung to it as it has clung to me. The less I have to muster, the more it has to offer. The strength at hand seems bolstered by my frailty. The darkest night has brought the greatest peace. Faith, the substance of things hoped for, the evidence of things not seen, emerges from the promise as diamond-hard, rock-solid truth. I may be dust, but faith's cable fixes me to a reality far greater than myself. Like Job, I know that, "I had heard of you by the hearing of the ear, but now my eye sees you; therefore I despise myself, and repent in dust and ashes.”

I am still emotionally tender. I get frustrated at our circumstances and feel twinges of anxiety at the uncertainty of Levi's future. But the truth delivered offers context. It is grounded in the promise that this life is not forever. Beyond death, beyond sorrow exist eternity and joy. Peace offered is not simple condescension, shallow comfort from the distant gods. It is knowledge that suffering, as we chose it long ago, does not have to end in emptiness. His suffering, in fact, delivers joy and the expectation of a reality that will one day reduce these past weeks, this life, to a needle prick of memory.

So, somehow within grace, there is room for sorrow and for joy. Sorrow in the life we have been given, joy for the glory that is promised. For me, it has never been so real.

2008-02-29T08:32:00.003-05:00

Dr. Mack pulled Levi's chest tube this morning. Just like that. And he slept through it all. Three to four days, he says, and we should get to go home.

Warm Hands

2008-02-28T12:15:00.005-05:00

Things continue to progress, he is now receiving no supplemental oxygen. His blood saturation is mostly between 91% and 93% (we had been told to expect numbers in the high 80's, the lack of full saturation is in part a result of leaving the pop-off valve in the heart for him to adjust to the increase in pressure, something that could potentially be closed in a year or so).

Last night was a long one. Over the last few weeks Levi has become chemically- and ventilator-dependent, and the withdrawal symptoms kept us up till 5:30 or so. He is now resting peacefully (as for me...).

On another note, if you knew Levi before the surgery be sure to hold his hands next time you see him. You might be surprised. They're warm.

Ice Cream and Smiles

2008-02-27T15:46:00.005-05:00

Larisa is on her way home to be with the kids so it's just me and Levi for the next 18 hours or so. They have pulled the two central lines and everyone seems very pleased with his progress. Just a few moments ago Bebi and I shared a treat, his first "real" food in over two weeks. 85 cent low-grade orange ice cream never tasted so good. It's nice to have him back.

God is great.

2008-02-27T09:26:00.026-05:00

2008-02-26T21:45:00.002-05:00

Well, I think this might be the happiest day of my life.

Since coming off the ventilator, Levi has rested better than ever, with less drugs—a few kicking episodes and a giant poop excepted. Upon request, he waved at one of his nurses. And just an hour ago, still tethered by an array of IVs, monitor wires and tubes, he locked his eyes on me and offered a real, genuine, toothy smile.

It has been a wonderful day.

2008-02-26T14:14:00.010-05:00

It's out! Will have to watch him for an hour or two to make sure the throat doesn't swell up and close on itself, but so far so good. Levi was so happy he cried. Well, he probably didn't cry from happiness—but I did.

As they were preparing to extubate him, the cardiologist who first determined that Levi had major lung problems stopped by for the first time since his last surgery. She pronounced the repair "perfect" and said she was really amazed he was doing so well post-op.

After all this waiting and watching, it just feels like Bee-bi has been born again.

2008-02-26T13:31:00.002-05:00

Things look good and they're about to start extubating ... pray that it goes well.

2008-02-26T10:01:00.002-05:00

Good news to greet my first morning back since Sunday. They're going to try to pull Levi off the ventilator by this afternoon. They've pulled back the pressure, so that he's essentially breathing on his own now, and they're going to see how he does. The internist is pleased that he hasn't seemed to have any adverse effects from the flu and is hopeful that he'll be ready to support himself. There's a chance that his airway will swell up after pulling out the tube and they'll have to put it back in, but we're hoping that won't be the case. Still don't know what that means in terms of him going home, but he'll definitely be a happier camper off that nasty breathing machine.

They've also cut his sedation in half, so watch out world—Bee-bi is waking up.

2008-02-25T23:40:00.003-05:00

Our two week anniversary has been marked with an influx of activity in the pediatric ICU. A restless teen shooting victim and a critically injured 5 year old (he was pulled under a car) were added to the mix. Nurses have been scrambling, monitor alarms are sounding constantly and the staff has seemed a bit strained.

Today, our neighbor, who has been here as long as we have, was taken off the vent. It was a process that involved a team of 5 or 6 people and took nearly an hour. If things continue to go well Levi will be next. Please keep this process in your prayers.

2008-02-25T09:25:00.006-05:00

Levi had done well as they have lowered his gasses (o2 from 100 to 30 and nitrous from 20 to 0) Last night, however, he took a little dip. They are still going to try and wean him from vent but it is a challenging and take a few days. On a positive note, this morning's echo looked good and they pulled one of his chest tubes.

2008-02-24T18:32:00.003-05:00

Despite battling the flu Levi did well today. They have been weaning him off of the nitrous oxide and his saturation levels have actually gone up. This afternoon he was averaging 95-99 percent saturations on 35 percent oxygen. If things continue to go well he may be off the vent in the next couple of days. At that point they will have to wean him off of his narcotics. Due to the prolonged sedation he has likely developed some dependencies.

There are still longterm questions in regards to how his lungs will respond to the new anatomy and how extensive the present damage is but it appears that the heart repair was successful.

Thanks so much for your support and please continue to keep us in your prayers.

2008-02-24T10:22:00.002-05:00

Fairly quiet night, except that Levi has tested positive for flu. He's running a temp this morning, but otherwise everything looks good, according to the docs. We're hopeful it won't stunt his progress too much.

I'm not feeling the greatest myself, so I'm heading home after a bit to take Tamaflu and a nice hot bath.

2008-02-23T08:59:00.003-05:00

Bee-bi sleeps this morning.

He is down to 30 percent oxygen, the level for extubation, and Dr. Sharma is starting him on Viagra this morning. They'll cut the nitrous oxide (I believe I have been misspelling this) back next. He's pooping in his diaper and the internist said his belly sounds good. He is graduating from Pedialyte to Pediasure. So we continue to march down the road of progress.

A Psalm for today ...

Oh sing to the Lord a new song;
sing to the Lord, all the earth!

Sing to the Lord, bless his name;
tell of his salvation from day to day.

Declare his glory among the nations,
his marvelous works among all the peoples!

For great is the Lord, and greatly to be praised;
he is to be feared above all gods.

For all the gods of the peoples are worthless idols,
but the Lord made the heavens.

Splendor and majesty are before him;
strength and beauty are in his sanctuary.

Psalm 96:1-6

2008-02-22T20:20:00.020-05:00

I spent an hour trying to hammer out an insightful paragraph on the mystery of miracles, but then realized that's probably best left to C.S. Lewis and people who've had plenty of sleep.

For now, I'm just glad that today my little boy opened his eyes, looked at me and said, "Mama." For now, I'm thankful that the doctors approach us with smiles instead of looks of pity. For now, I'm thrilled to think that soon we could be taking Levi home.

So much has changed. I never thought that I could be the mother of a sick child. I thought I knew my limits. I looked with wonder at others who have children with disabilities or longterm illnesses and wondered how they coped.

To be honest, I probably haven't had time to process everything. The last 10 days have been unreal, surreal, exhausting, numbing. But I'm pleasantly surprised to discover that beneath all that, I am not afraid.

For now I am simply thankful for the gift of Levi. For now, that is enough.

2008-02-22T09:35:00.008-05:00

I thought they couldn't possibly jam him with any more tubes, but this morning when I returned from a night at home I found Levi sporting a fresh one down his nose and one in his chest on the left-hand side, nicely complementing the one on the right. They're trying to drain off the fluid he continues to retain and, possibly, start feeding him whatever you can cram through a millimeter-width tube going down your nose.

They've pulled back his oxygen to 45 percent, and his sats are staying in the 90s. The nurse said they'll hopefully keep weaning him off the O2 today and tackle the nitrix after that. They're also starting him on Viagra (for his lungs, of course, what were you thinking?)

All told, he's doing well. He's been opening his eyes, and they said when they put the chest tube in last night he was mouthing words. Whatever he said, I doubt it was complimentary, but he seems to be resting pretty well over all.

A shout out to the ones who have been caring for us so well while we're living in the ICU. Our family has been fantastic—groceries in the fridge, laundry done and the rest of our brood taken care of. Thanks also to those of you who have brought us food in the hospital and constantly inquired to see if there is anything you can do. It is wonderful to have such a great support system and know so many of you have our backs.

And for those of you who have been taking time to pray for us, holding prayer services and sending messages of scripture and encouragement, I can't tell you have many times in the past week and a half I've felt too tired or sad to pray and I've just had the sense of being carried and covered by the prayers going up for us around the clock, around the world. We love you all.

2008-02-21T16:31:00.005-05:00

Levi's progress has been stunted today by respiratory congestion but overall he is doing well. The internist commented that he is markedly ahead of where he was after the last surgery. Dr. Mack, our surgeon, said today's echo looked good, the pressures in his right ventricle are much improved and everything is functioning as planned. Actually he said a lot of stuff about inflows, outflows and what not but the above part is all that I really understood.

I met with the pacemaker rep and and he gave me a scale model of the half dollar size unit that is in Levis upper abdomen. He also gave me some useful information, such as if we linger at a security gate at the airport or between those chip sensors you see at the exit of retail stores Levi "may" pass out and fall on the floor. This is not big deal, he informed me, just drag him away from the interference and his heart will start beating properly again. That's good to know. Also, security officials at the airport may want to "wand" him to find out why he is setting of the alarm but I am not to allow that to happen. I am looking forward to that confrontation.

The cumbersome language and poor sentence structure may have given away the fact that this post is being made by dad. Larisa is headed home to spend some time with the rest of our family.

We are very thankful for all your support and for what God has done so far. Please keep Levi in your prayers, however, as he still has a way to go.

2008-02-21T08:47:00.011-05:00

We made it through the night! Have had some false starts with the pacemaker, with a couple extra trips in for the rep and Dr. Sharma through the night. Levi's oxygen sats are also a little waffly this morning, and they're keeping him at 60 percent on the vent for now. All this has to do with the fact that he's fighting the pain and fluid in his body after surgery, and things should level out over time.

Last night the nurse on duty made the comment that, given the severity of the heart defect Levi was born with, it was "a miracle" that he had made it this far. Dr. Sharma has said several times that every doctor he has consulted on the case (probably numbering 15-20) has offered a different opinion on Levi's condition. It occurred to me that they have probably not seen a kid like this survive.

2008-02-20T21:46:00.006-05:00

Just went in to see Levi. He looks good, is on 50% oxygen and holding his own. He's on the nitrous oxide, but they plan to pull him off that tomorrow. The permanent pacemaker they put in is already malfunctioning, so they're trying to figure out the settings, but it appears to be a minor problem and everything else looks good. The doctors seem really relieved and are talking about trying to take him off the vent by tomorrow night and get him eating, etc. So far this seems like a really different situation than the last time. We are really happy and thankful.

2008-02-20T20:23:00.002-05:00

Levi is out of surgery. They were able to make all the repairs they planned on. The next 24 hours will be pretty critical. Dr. Mack seemed pretty pleased. Dr. Sharma just seemed exhausted. They did confirm that the pulmonary hypertension is something he will have to deal with for the rest of his life. Time will tell what that means.

Thank you so much for your prayers and messages of encouragement.

2008-02-20T18:47:00.000-05:00

They're closing him up. 45 minutes and he'll be back in the ICU. Should be able to talk to the docs then.

2008-02-20T18:25:00.000-05:00

Surgery has taken a little longer than expected, but we just got word that he's off the bypass machine. They're doing a transesophogeal echocardiogram to check the pressures and see how everything is working. It will be a little while and they didn't specify exactly what happened in the OR, but the nurse said that they sounded "pleased."

2008-02-20T13:35:00.000-05:00

They were delayed in starting, at 4 he was on bypass and underway.

2008-02-20T10:02:00.001-05:00

Fully off the nitric. O2 sats hover around 96 percent. Dr. Sharma has said that the surgery may actually cause him to be bluer post-op. Continue to pray for his lungs, as well as the surgery ahead.

2008-02-20T08:55:00.000-05:00

Good news already this morning. I arrived in the ICU to find the respiratory therapist "power weaning" Levi off the nitric oxide, which was treating his pulmonary hypertension. In 45 minutes they had dropped him from 20 ppm to 4 ppm. They have also further dropped his oxygen to 30 percent coming through the ventilator, the level at which they typically extubate patients (we breathe 21 percent oxygen). His oxygen saturation levels remain at 100 percent.

Don't know what might change after surgery, but to us this is a promising sign.

2008-02-19T18:27:00.000-05:00

Time. Stands. Still.

Whatever had been, whatever will be, has been consumed in the pulsing throb of now. One day I know I will talk and laugh without this heaviness. One day I will again plan vacations, watch movies, shop at Gap.com. These things hold no interest to me now. Each meal I eat, each book I read, each joke I share is a little flat, a little sad for this knowledge that has changed our lives forever. My breaths are prayers, my laughs are cries for help, my time seems wasted if it's not with him, for him somehow.

I have spent my life living in the past or future, either caught up in regret and wistfulness or stretching hopefully toward greener grass. But my rooting has now come, on the occasion I would choose both to forget and to fast forward. And while I sit—an hour, a week, a hundred years goes by.

Seven days ago I saw ahead a difficult but likely order of events. The truth has stopped me in my tracks. It has prioritized the detail of my life. It has put in stark relief the true and the superfluous, the solemn and silly. I see now that I saw only darkly.

I say I know, say I believe, but have I ever really? Have I ever let the knowing change me now? I have made promises, but does love—fully present, fully alive—touch the people I brush up against each day? It seems that I have always let the past and future nudge away now's opportunity. It seems I had forgotten, or perhaps never really known, that today is all I have, now is the only time.

I know this too shall pass. God willing, I will buy groceries, pay the bills, cook supper once again. I know the times will change ... I hope that I do not.

2008-02-19T15:03:00.001-05:00

Levi has been scheduled for follow-up surgery tomorrow, Wednesday, at 1 p.m. EST here at UT. Based on advice from Atlanta, the doctors here will try to improve the current repair. In brief the doctors in Atlanta are guardedly optimistic about the heart's (and lungs' to a certain extent) ability to rebound over time and feel we should make an attempt to do the most complete repair the present anatomy will allow. Then we'll just have to see how his body responds. Please keep this in prayer, especially over the next 24 hours.

2008-02-19T11:30:00.000-05:00

Dr. Sharma dropped by briefly to say that Atlanta had proposed two fixes, likely temporary, for Levi. The first would be what the doctors here have already suggested--reversing what was done in surgery to restore him back to his previous condition. The second would be to go in and complete the repair, adding a bigger patch in such a way as to free the obstruction in his heart as well as create a "blow hole" of sorts to relieve extra pressure. (My very crude interpretation.) Then they'd send Levi home to see how he does.

Dr. Sharma is going to try to talk with the Atlanta doctor as soon as possible and bounce the ideas off the surgeon and his partners here. He'll get back with us, hopefully sooner rather than later, to expound on the alternatives and what they might mean longterm.

A piece of potentially positive news is that apparently the doctors in Atlanta feel that at least some of Levi's lung problems may be reactive—resulting from the effusion of blood to the lungs after surgery—as opposed to fixed or longterm damage, so his prognosis could be better than previously thought.

In the meantime, Levi has developed some pneumonia, probably due to his time on the ventilator and other various paraphernalia, so it will be a couple of days before anything can happen. Dr. Sharma thinks that's good because it will give everyone time to consider the opitions and make the best decision. I doubt Levi agrees. At this point he is nearly levitating off the bed he's so ready to get out of here. At least his antics give us something to do while we wait.

Will post more details later ... hopefully.

In regard to the meeting of the minds...

2008-02-18T22:12:00.000-05:00

When we came back from supper we learned that Dr. Sharma (our cardiologist) had finally heard from Atlanta and had been given a number of opinions/ideas about how to proceed. He printed off the email and rushed off for a rendezvous with Dr. Mack (the surgeon). Although we tied the nurse to the chair and interrogated her extensively we were not successful in obtaining more information. Apparently we will just have to wait until tomorrow.

2008-02-18T14:31:00.000-05:00

Doctors in Atlanta meet in the afternoon. Probably no word until late today or early tomorrow.

2008-02-18T11:35:00.001-05:00

Still in a holding pattern.

The cardiologist hasn't been by yet, we presume he's waiting to get some kind of word from the center in Atlanta. Levi has had a very restless morning and the pacemaker ran out of battery, which made for a very exciting few moments as his atrium kept beating without much response from his ventricle. One thing this confirmed: he needs a pacemaker.

Other than that, no changes except that he continues to get stronger. He looks beautiful, his skin is Ugandan black for the first time since we've known him. He continues to thrive on 60 percent oxygen. They're backing off the doses of lasik and have pulled one of his blood pressure monitors. He is spiking a bit of a fever now and then, and they're putting him on an antibiotic. And he keeps waking up. Today as Mindy (my sister) and I were trying to soothe him while he thrashed, he would scratch us each in turn.

Bee-bi is fed up.

Will let you know something as soon as we do.

Reflections on a weekend

2008-02-17T10:47:00.003-05:00

As the week begins, we arrive with a suitcase, a week off work, a plan. Friday ends in a disorienting progression of bad news. We enter the Sabbath exhausted by worry and weeping. Nothing to do but wait.

The new day begins, brings a groggy moment in which sleep has pushed back memory and pain. Then past connects with the present night had no power to truly overcome. Before us lies a day of nothingness—no cheerful chatter, no hugs, no hope that anything will change—just one long nap from which we hope and pray our son will eventually awake. Nothing to do but wait.

The doctors have gone home. The records sent to more experienced minds sit quietly on darkened desks. We try to find meaning in numbers on monitors, in the tone of the doctor's voice, in the gentle squeeze of Levi's hand. Nothing to do but wait.

But time can be a gift. As we wait and Levi rests, a greater thing moves in to fill the void. On such a day, in such an hour—as incense from the temple of hearts and homes and houses of praise rises up on his behalf—comes peace and grace and, yes, even joy. No angels, no visions, no point-blank assurances. He does not rise up and walk. But we are satisfied. We are given hope. We renew our strength.

Nothing to do but wait. And yet, everything is in the waiting.

2008-02-17T09:28:00.000-05:00

Oxygen on the vent is down to 60 percent. He's getting tired of laying still, though, and they've added Benadryl to his cocktail of sedatives. Will see the doctors later...

2008-02-16T21:54:00.000-05:00

2008-02-16T21:44:00.000-05:00

It's been a good day. Levi's platelets have doubled from 22 to 57. They have started to pull back his oxygen, and as of this post he was at 75 percent (down from 100) with no drop in saturation. His blood gas levels are really good and even improved after they dropped his oxygen. All the fluid has come off his lungs, and his swelling has almost disappeared (he looks like Bee-Bi again!) And—the crowning achievement—he pooped for the first time.

We know there are going to be lots of ups and downs from here, but we needed a day like this. Thanks to all for your messages and prayers.

Day of rest

2008-02-16T09:18:00.000-05:00

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. ...

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

2 Corinthians 4:7-18

Sorry we cannot respond to everyone personally, but we really appreciate all your messages, encouragement and, especially, prayers.

2008-02-15T14:55:00.000-05:00

Nothing about this situation has been easy and this afternoon things appear to growing even more difficult. After further review of yesterday's heart cath the staff of physicians here have reached a few conclusions. One, he won't be able to come off of life support with the repairs that have been made to his heart, so they will likely have to open him back up and basically reverse the process. Two, according to the cardiologist's opinion, he has terminal pulmonary hypertension. That means if they fix the problems with his heart, his lungs won't support him.

They are sending the records to specialists in Atlanta to get another opinion. We have asked them to explore the possibility of a heart/lung transplant.

Valley of decision

2008-02-15T09:41:00.001-05:00

Following a brief conversation this morning with Dr. Mack, the cardiac surgeon, what is clear is that nothing is clear.

The bottom line is that Levi's heart problem is much more complicated than originally thought, both by the team that initially diagnosed him and by the doctors here. This is made even murkier by the fact that we have no records detailing his medical history, so they don't know what issues he was born with and what has developed over time. All the doctors know is the Levi has a complicated combination of major heart and lung problems that Dr. Mack said will probably require many medical minds to determine the best route to take.

Levi is still on the ventilator. They've added a new medication to keep his heart from pumping as strongly, because the patch they put in to cover the hole in his heart is actually serving as an obstruction when his heart contracts, meaning he can't yet breath on his own. Hopefully the esmolol will help take care of that and get him healthy enough for whatever happens next—whatever that might be.

Of course, we knew none of this going in. But maybe that was for the best. Now we take one day, one hour, one minute at a time. Please continue to remember us in your prayers.

Chapter 2

2008-02-14T18:35:00.001-05:00

Following this afternoon's heart cath we were ushered into one of the small rooms that doctors use to talk to patients about important stuff. The first words out of the surgeons mouth were, "to be honest, this was a lot more complicated than we thought." That statement was followed by 30 minutes of sketching, explaining and pointing at wall charts in an effort to communicate the complexities of the human heart to our simple brains. The short of it is, however, that as soon as we can get Levi healthy enough we will transport him down to Atlanta for an additional surgery.

Another detour

2008-02-14T09:02:00.000-05:00

At 1 p.m. today, they will do a heart catheter on Levi to try to figure out why the oxygen levels in his blood are so low. They've actually been dropping over the past 24 hours, in spite of the fact that they're giving him 100 percent O2 through the ventilator. With the heart cath, they should be able to see whether this is a result of the fluid that's still on his lungs, his heart function or the pulmonary hypertension they found after surgery—or a combination. Under normal circumstances he would be off the ventilator and much of the sedation by now, which would have helped him lose the fluid. So it seems that each issue compounds and complicates something else.

Levi is sleeping now and did pretty well last night. I found out that the night before, as I was drowsing in the ICU lounge, he was going nuts, kicking his feet and yanking on cords. He even managed to pull out his chest tube. Anyway, a bunch of drugs kept him fairly quiet last night. Think this is going to be a long haul.

Thanks for the prayers and all the notes of encouragement. Stay tuned...

Modern medicine

2008-02-13T13:39:00.002-05:00

I suppose that ER, Grey's Anatomy and Scrubs should desensitize us all to the intricacies, invasiveness and unpredictability of modern medicine. But, when it's your kid on the gurney, a ventilator tube coming out his mouth, IVs running into his hand, both feet, his neck; a catheter draining pee and a tube draining blood from a 6-inch incision in his chest—well, nothing really prepares you for that.

And then, after you have choked back the tears and stifled the urge to panic and run, it is amazing how quickly you adjust. Within minutes you are reading the paper, chatting with the nurses about the weather, stopping occasionally to cradle his head or hold his feet when he wakes up crying and fighting all that has invaded his body.

In this place, these things are the facts. This is the place where little children come because otherwise they would die. This is the place where tiny babies fight for life and their mothers grow accustomed to sleeping on the floor under the fluorescent lights of the PICU lounge. This is the place where doctors say things like, "Well, she's going to be here a really long time, but I'm pleased with her progress." It is a place where drains and needles and incessant beeping make you forget that there is a world of children going to school and riding bikes and eating macaroni and cheese.

Of course, this is not normal—at least it should not be, was not meant to be. And yet, for us, for Levi, this is the place of miracles.

R&R (rest and recuperation)

2008-02-13T12:40:00.000-05:00

The doctors tell us this will mostly be a day of rest. They are keeping him on the respirator another day due to the pulmonary hypertension (PHT). He is, however, breathing on his own power, the breathing tube is just there to supply oxygen and medication for the PHT. We spoke with 2 additional cardiologists this morning who were more optimistic about the lung problem and feel it easily could be a result of the surgery and resolve itself. As for now, Levi is responding well to the medications and resting fairly consistently. I hope he will forgive us for what has turned out to be a singularly unpleasant experience. Next time, he may think twice before chirping, "Mama, go car!"

Complications

2008-02-12T18:40:00.000-05:00

It appears that Levi has pulmonary hypertension in addition to his heart condition. The causes and ramifications of this are not yet clear to us but it does appear to be related to his need for a pacemaker. We hope to learn more in the morning.

Two in one

2008-02-12T18:39:00.001-05:00

Well, the wireless network is no more in the ICU waiting room, so I waited until we could see Levi to post this.

Talked to the doctor about 12:30 p.m.—everything went well. Dr. Mack repaired the ventricular septal defect and the thickened muscle beneath the pulmonary valve that was restricting blood flow to the lungs. Fortunately, he said there was little damage to actual valve itself. He's still on the ventilator and they have him on a temporary pacemaker, because his heart is still beating a bit slow on its own.

Visiting him in the ICU, he doesn't even look like himself because of the water weight he gained in surgery. And with tubes coming from his mouth, neck, heart and other extremities he's a sight to behold.

The doctor said the next day or so will be critical. But we are really thankful he made it through the surgery.

Thanks to all for your prayers and messages of encouragement. We'll keep you posted on his progress.

11:41 a.m.

2008-02-12T11:41:00.001-05:00

Levi is off the heart bypass and doing ok. Expect to talk to the doctor in another hour or so.

11 a.m.

2008-02-12T10:59:00.001-05:00

The surgeon has completed the repair and now they will work to wean Levi off the heart/lung machine. Should know something more in the next hour-and-a-half to two hours.

7:43 a.m.

2008-02-12T07:43:00.000-05:00

Levi just went back to surgery. He was in excellent spirits, having been given a dose of a pink medicine that made him both sleepy and extraordinarily silly—beating up a stuffed bear he'd been given with his toy plastic hammer and throwing himself face first into the pillow on his rolling bed, then screaming and laughing hysterically. He attracted a bevy of nurses, alternately smitten by his grin and alarmed at his antics, and an anesthesiologist resident wondering what he might have gotten himself into. The anesthesiologist has nine kids himself, six of them adopted, so that's kind of a nice connection.

Anyway, in all the commotion they slipped him out of the room for surgery without a cry for Mama—and surprisingly, Mama didn't cry either. (Well, not much.) We're now waiting for the call that they're starting the procedure. If all goes well, the anesthesiologist said they'll be able to wake him at the end and pull out the breathing tube before he goes up to ICU, which would be great. But we'll see. Stay tuned...

Finally family

2008-02-11T13:10:00.001-05:00

It was only a formality, but about 10 a.m. this morning at the Roane County Courthouse in Kingston, Tenn., Timothy Sebaduka, Timothy Waiswa and John Mutabazi officially became Timothy, Levi and John Brass.

Timothy was the only one who went to the courthouse with us, because he is 16 and had to sign his consent. The courtroom was packed and would have been challenging with the babies. When we got home we took everybody out for Brick Oven pizza and now it's time for naps. After lots of nail-biting through the process in Uganda, it was all very wonderfully anti-climactic. And it is good to know that we head to the hospital tomorrow not just as Levi's legal guardians but as his mom and dad.

We are tremendously blessed.

Preparation Day

2008-02-10T19:39:00.000-05:00

Sunday is usually a day of clean-up, dishes and laundry, and today we kicked it up a notch, getting ready for the week ahead. It's amazing how grunge collects in a house with seven people in it. So it was a day to comb closets, scrape under beds and generally dust, mop and organize. We are not the cleanest people in the world, and with five kids we are even less so. I always take comfort in the story of a woman who raised twelve children and didn't have much time or energy for housework. A stray dog poop in the corner would linger until it became hard enough to kick around the house. We have not yet stooped to that ... But I digress.

Levi has been in great spirits. The strangest thing about this surgery is that he is not a sick kid. He runs around and sings and wrestles with his little brother. Just looking at him, you would never think that he was not a regular little boy. But put your hand on his chest, feel the "swoosh, swoosh" sloshing of blood that should be "thump, thump," and you realize all is not right in his world.

Levi's exact condition is a variation of tetralogy du fallot. This is a collection of heart defects that in very general terms keep his blood from becoming fully oxygenated. There is a hole between the left and right atriums and his pulmonary valve is restricted. Bottom line, the heart operates inefficiently and if left alone he would, at some point, die. The condition causes cyanosis, also known as "blue baby syndrome," and many children require operation before they reach Levi's age. Some reach adulthood before it is corrected, so there is a lot of variation.

We met with Levi's surgeon, Dr. John Mack, on Friday and took care of the preop at the same time. The procedure will take 3-4 hours. Just 45 minutes of that is taken with the operation itself. The rest of the time, they will cool his body and the heart/lung machine will take over. Then they'll have to reverse the process and make sure his heart can resume the job. We go in at 6 a.m. Surgery begins at 7:30.

Dr. Mack said while the echocardiograms Levi's cardiologist has ordered over the past several months will give him a general indication of the particulars of his condition, it will be difficult to tell the extent of the damage or his longterm prognosis until he actually opens his chest. His chances of survival are very good—95 percent for patients with tetralogy du fallot. Because this surgery typically is done within the first six months of life, Levi may have some longterm damage due to enlargement of his heart. Lots will also depend on how his body tolerates the surgery and how quickly he recovers.

Following the procedure, Levi will be on a ventilator for up to 24 hours and remain in the pediatric ICU for the duration of his stay, probably around five days. Full recovery will probably take one to six months, although kids usually rebound much faster from open heart surgery than adults.

So, we head into a week that's full of uncertainty, sleepless nights and undoubtedly tears and worry as we see a little boy who has wormed his way into our hearts endure an ordeal that will require him to fight for his life. And so we sweep, fold laundry, clean closets ... things we know how to do, things we can control. The rest we leave to prayers and patience.

Setting the stage

2008-02-09T15:48:00.000-05:00

Almost exactly six months ago, Levi came home. He is 3 years old, not quite 3 feet tall, 27 pounds and a force to be reckoned with. He loves Cheerios, milk and to "go mama's car." He is always helping, always busy, rarely sleeps past 6 a.m. and flirts like crazy. He has the worst temper in our family and the best smile. At the orphanage in Uganda that was his home, he was known as "the mayor." To him and to us, he is now "Bee-bi."

He is here because his mother died shortly after he was born and his father couldn't care for him. He is also here because he had a congenital heart condition that can't be repaired in Uganda, where he was born.

Monday, we will finalize the adoption of Levi and two other Ugandan boys, John and Timothy, who came to our home at the same time. Tuesday we head to the hospital to ensure that Levi will be our son for a long time to come.

Welcome to our journey.