CLIFFORD WINSTON-SALEM - Errol Milner Clifford was pure joy. He was born on March 8, 2006 and died in his parents' arms on Wednesday, Dec. 23, 2009. From his first breath, life was a physical struggle due to a chromosomal defect that caused Errol to have a major heart problem as well as other systemic health issues. Errol faced all these challenges with an incredible joie de vivre, as though he knew every day was a miraculous gift. Although severely limited by his disabilities and the suffering he endured through five open-heart surgeries and long hospitalizations, Errol found more joy in his short life than most of us find in decades. He was delighted by the simple pleasures most of us forget to enjoy: squealing in delight as his beloved brother, Owen jumped off the sofa, bursting into laughter as his grandmother sang him a song, and howling with joy as we approached the Children's Center every morning. Errol never learned to speak, but his first sign was for "love," and he loved more profoundly and openly than anyone we have ever known. He loved his brother, Owen best, and showered all of his family, his friends, and the spectacular teachers at the Children's Center with an affection so pure and true that all those who cared for him fell in love with him. His love widened to an entire community when a neighbor from Washington Park, Eddie Ingle, realized that Errol's family was struggling terribly under the weight of medical debts and organized a fundraiser called Seeds of Love for Errol. In the process of raising more than enough money to pay these debts, an extraordinary group of friends and neighbors came to see past Errol's disabilities and know his beautiful spirit. We would never have known Errol's fabulous personality if not for the heroic work of many brilliant, courageous and dedicated medical professionals. Dr. Susan Hunsinger and the entire staff at Advance Pediatrics have become like a second family. Dr. Mike Hines and Kari Crawford, many kind nurses including Jen Twito, Leslie Butcher, and Keyatta Lackey, and Dr. Mary Christiaanse of Baptist Hospital gave us the medical miracle of Errol's first three years. The staff at Duke Hospital did everything possible to save Errol in his last two months, and gave him the ultimate gift of a dignified and peaceful death. We especially thank Dr. Ira Cheifetz, who was a kind and compassionate guide in our darkest hour, as well as Dr. Ron Kanter, Dr. Kevin Hill, and all the nurses who cared so well for Errol in his last days, particularly Casey Saylor, Laura Gorsky, Rebecca Smith, Jane Claire, Lexi, Maggie, Ashley, Sue, RaeAnn, Janine, and many others. We thank the entire community of the Children's Center, in particular his teachers, Audrey Campbell, Paula Sladky, Anne Clayton, Tamara Levi, Susan Colbert, Karen Ranson, Jennifer Pegram, and Paula Gavlik. We are also especially thankful for the loving support of Mike Britt, Carol Kirby, LouAnn Spell and Julie Hanes. We will always be grateful for their belief that Errol's health, happiness, and intellectual development were worth their constant loving efforts. We thank our generous friends from Team Errol, who expanded our definition of family and carried us so that we could carry Errol through his last year. We have relied particularly on our great friends, Clare Fader, Brad Cokendolpher, Rick Mashburn, Ken Frazelle, Eddie Ingle, Katy O'Kennedy, Betsy Towns, Becky Brown, Becca Fuller, Bill Watkins, and Mary Haglund. We would also like to thank the staff of Camino Bakery for their compassionate friendship and for beautifully maintaining the family's business through many tragic and uncertain days, as well as Jonathan's colleagues at UNCSA for their limitless generosity and kindness. Finally, we thank Errol's aunts, uncles, and cousins, who loved Errol so well, and especially his grandparents, who helped us greatly with his care and loved him like he was their own son. In lieu of flowers, please send contributions to the Children's Center in Errol's honor.

A Cape Fear River Memorial to Errol

Christmas Day 2009

A Cape Fear River memorial to Errol
(please follow link to view slideshow)

The weather was overcast and misty
as we gathered flowers from Becky's garden.
A dish of whole flowers and petals was prepared
and we took these to the SOLOMON T.
As we warmed the motor, a pelican joined us
on the transom to get a better look.
The Moravian Star in the photo is part
of our boat's Christmas decoration.
And then we were for the Cape Fear
as sunlight sifted through the clouds.
We released the flowers into the tossing,
surging current, their colors standing out
against the swirling river.
Soon the tide would turn for home
and the river would run back to the sea,
once again part of this great ocean planet.


Capt. Bert Felton
with help from Becky, Melissa, and David

Memorial Service

A memorial service for Errol will be held on Wednesday, December 30 at 2:00 p.m. in Wait Chapel at Wake Forest University in Winston-Salem.

More details and updates on memorial service arrangements to follow.

Please post any special memories, photos or videos of Errol on the comments button below, send them to jonathanmilner@hotmail.com or bring them to the ceremony.

There will be tears of loss and tears of joy! There will be music!

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Christmas

Errol Milner Clifford died in his mother's arms with his father at his side surrounded by his beloved family at 4:45 pm on Wednesday, December 23.

Bad News

The doctors just found a blood clot in Errol's inferior vena cava.

Having a clot is extremely serious and its treatments carry many risks.

We are trying the least dangerous of the bad options and giving Errol lots of heprin (a blood thinner). The risk is that he will bleed profusely. At this point, Errol is recovering from two surgeries, fighting an infection, and now dealing with this blood clot. We are watching his labs and hoping against hope. I am afraid Errol is up against too much.

5.3

5.3!!!!!!

Hot Damn!

Go Errol!

Good Trajectory

This is a picture of Errol from his third birthday

Good six a.m. lab results. Lactate down to 6.3 (from 6.9).

We are headed in the right direction. Go Errol! Go!

Tears of Joy

Tears, but tears of joy. We are still in the weeds, but right now Errol's sats are up, blood pressure looks better, and Errol is doing better all around. The PCICU team is amazing. Errol is rallying, we are still on the edge of catastrophe, but we are pulling ahead. Go Errol! Go! We miss you so much. We want to see you smile. You are so beautiful. Come back.

This is another picture of Errol from his third birthday

We are hoping for good labs in the next few hours!

We are still in the most crucial hours.

We have shed many tears.

Still, there is laughter between the tears.

A fellow in the PCICU told me the following story about Duke Med.

There is a psychiatrist at Duke named...

Dr. Looney.

There is a urologist at Duke named....

Dr. Wiener.

I looked it up. It's totally true.

Dry your eyes.

Think of Errol.

It's close to morning time.

We'll keep you updated.

Good Lab Report

This is a picture of Errol from his third birthday

It's the longest night of the year. We just got Errol's 4:00 lab report back. His lactate levels are coming down, which is great. This afternoon they got up to around 9 which is really awful. Since the surgery they have been dropping, which is what we want. Now we are down to 6.9 and the goal is to get them to less than 3. As the lactate level goes down, the efficiency of Errol's heart goes up, and the health of his vital organs increases.

We are very far from out of the woods, and beyond the woods are shark infested waters. Things here are still grim, but we are, at long last, on a positive trajectory.

Waiting

Errol's pacemaker is in. The surgery was a success. Errol's heart is working much better now and is probably pushing out around 30% more blood. Because of the infection and Errol's cardiac arrhythmia, Errol's organs were not getting enough oxygen and by this afternoon were in crisis. Now, thanks to the pacemaker, Errol's organs will get better support. Now we get to hurry up and wait for the labs to come in and tell us about his organ function. Everything depends on what happens in the next few hours.

This is a picture of Errol from his third birthday

Emergency Surgery

Dr. Lodge, the cardio-thoracic surgeon, just started emergency surgery on Errol to install a temporary pacemaker to give his heart more support. They can't move Errol to the OR so they are going to do the procedure in the PCICU. Cary is with Errol. I am a mile away with sleeping Owen (who has no idea what's happening) who I can't take to the hospital (no kids allowed). Heroic Benjamin (my brother) is driving from Winston to Durham right now so I can dash to the hospital to be with beloved Errol. The procedure should last until about midnight.

Bad News

Errol definitely has an infection and it looks like sepsis. This is an extremely dangerous condition for anyone, but our doctors think Errol has an immune deficiency, and that will make his path even more precarious. We will do a CT scan tonight to try to locate the source of the infection and we are treating his infection with a variety of antibiotics. Things are grim.

This is a beautiful picture of Errol from the past year

Postponed Surgery

Hold the phone. Errol's pacemaker surgery has been postponed until...???

Errol's blood is doing funky things and they can't risk surgery until his blood behaves or he might bleed to death! Some very, very, very, smart people up here in the PCICU can not explain why Errol's blood has gone all wonky, so hematology (vampire) doctors are going to come look at him today and will hopefully figure out what Errol is up to. CURVEBALL strikes again. Once Errol's blood is back in the acceptable range we will head back to surgery but that won't be any time soon. We miss Errol so much, he's right here in front of me, but he's more doped up than Keith Richards and we haven't seen his smile in a week. We'll update you when we figure out what's going on with Errol's blood and when we get our rescheduled surgery time.

Love

This is the picture of Errol and his pure love that I will focus on at 11:00 today.

Special

Owen in Duke Gardens

Errol will have surgery tomorrow morning to install a pacemaker. It will be open-chest, not open-heart surgery, and the doctor said that on a scale of one to ten, with one being a cake-walk, and ten being the most fantastically dangerous, Tuesday's revised-Fontan was a ten, and tomorrow's surgery is just a two. So we will be a few steps down from panic-stricken. The surgery should help Errol's heart be stronger and more efficient which should give him an added zing as he recovers. Think of Errol around 11:00ish in the morning. We feel the love coming this way!

Light

It snowed here last night. It's really cold but beautiful.

Errol is really out of it right now - post-opish. They've got him sedated and doped up on pain meds (sounds like my twenties). No operating heavy machinery for Errol, today. He had a really bad day yesterday - working so hard to breathe - and the PCICU team wants him sleeping and stable for the weekend so that he can get his strength back.

Errol is most likely going to have surgery to have a pacemaker installed either Monday or Thursday. We still hope his heart becomes synchronous, and there are some encouraging signs, but if things stay the same they will have to open him up.
They say it's not a big deal, "we just go into the chest, but we don't have to open up the heart." Try telling that to Errol's poor chest which is just now starting to heal. But I suppose it's better now than later.

We will definitely be here for Christmas and almost certainly for New Year's. Before you feel too sorry for us, please know that there is an espresso stand in the hospital!!!! I know that won't make Errol feel better (they won't let me put him on a latte-drip - bastards!), only getting healthy and home will really do the trick.

Sometimes when I see Errol in pain, straining for breath, miserable, pulling at his tubes, suffering, I wonder if we are doing the right thing to work so hard to save him. I wonder if there is enough light in his life to outweigh the suffering. But if I step out of the PCICU tunnel and look at just one picture of Errol smiling, the wondering stops.

Before the last surgery, I thought we were going to lose Errol. I thought: this is the best person I've ever known (sorry Katie Couric), he's achieved enlightenment, he's spreads joy to all. What a huge pity to lose such a rare and blissful light.

The snow is starting to melt outside. It will be a long time here at the hospital but one day we will step out into the sunlight and Errol will look up to us and smile.

Blue

Errol had a rough afternoon with low sats and trouble breathing.
To try to help him get more oxygen, the docs sedated Errol and put another chest tube in to drain off fluid from his right lung.
They drained off about 350 ml (a can of pepsi worth of fluid), but that wasn't enough
to bounce his sats up, so about an hour ago, just as the sedation was wearing off, they re-sedated Errol, paralyzed him (so he couldn't move and hurt himself, and then re-intubated the Little Man. The breathing tube went right in and now Errol's unparalyzed, sleeping soundly, and his sats are back up. Whoo Hoo!
Now all we have to do is get those tubes back out!

Two Steps Back

They don't allow visitors in the PCICU from about 7:00-9:30 each morning. When I left Errol at seven he was struggling just a bit to breathe, but otherwise, he was doing pretty well (all things considered). When I returned at 9:30 Errol had taken a turn for the worse. His sats had dropped and they had him on a mask (check it out - it is made to resemble a purple chicken head - what kind of sicko made the decision to buy masks that look like chicken heads?). Also, Errol has fluid in his right lung, so the docs have sedated him and are putting a chest tube in - again. They've also started him back on his heart medicine, which should also make it easier to breathe. If draining his lungs doesn't help Errol breath they will have to re-intubate him (put a breathing tube down his throat - no fun). We have definitely taken two steps backwards today. But we've done the hospital two-step before, and it's pretty much how Errol rolls. I hate for Errol to be in so much pain, to work so hard to breathe so little, and I hope we can start moving forward again!

Hold the presses. Errol is stable, but a monk just walked into the PCICU and I just about jumped out of my skin. When I think of monks I think of last rights (or Belgian beer - and there's not one bar in this whole damn hospital!) And they call this progress!!!!

Day four PCICU

A picture from last year's Christmas

The docs have weaned Errol from his cardiac meds and now his sweet little heart is working well all on its own! Unfortunately, Errol's heart is still arrhythmic, and we are hoping it will straighten itself out (as hearts often do). I'm thinking of Errol's heart right now and imagining it beating synchronously. Join me, it might just work!

In the quest for tube free Errol, the Little Man was extubated yesterday (go team!)
2 - 4 - 6 -8 Who did we just extubate! Errol! Errol! Errol!
and his sats are pretty good (for Errol - I'd be on my knees - wait, I am on my knees - I'd be passed out) but he's having a hard time breathing. We don't know if the breathing difficulty is because of pain - he's mostly off pain meds (he's tough as nails, they stick Errol for blood and he doesn't even flinch or wake up) - or if it's because of his partial lung collapse (not unusual in post-op). The docs may have to stick a chest tube in him this morning to drain off the right lung, or he may just get better. While you are sitting there with visions of synchronous hearts dancing in your head, take a second and imagine his lungs drying out. But not too much. We don't want to dehydrate the lad!

There is a ton of science up here in the PCICU but there is also a lot of art involved (knowing what to do and what not to do, when to do it, when not to do it. There are hunches, bets, guess work, hopes.) It's fascinating to watch. Most doctors try to pass their hunches off as hard science, but these Duke docs are good enough and confident enough to tell you when they don't know. We appreciate their transparency.

So, as Errol loses tubes and lines (an untethered Errol is the goal) the main problem right now is getting him to breath easier. Do your visioning homework and check back for updates.

Cary and I moved into a friend's sunny Durham garret last night. It is so comforting to be in a cozy home with shower, fridge, and stove - hot damn! We are dividing our days and nights at the hospital (1st shift: 4 am til noon; second shift: noon - together!!!!; third shift 8 pm til 4 am). We have been apart from big brother Owen since Tuesday and we miss him so. We are ecstatic that he will be joining us this afternoon - hooray! Owen's life and his Christmas dreams have been totally disrupted by this hospital stay, and we are determined to make this as fun a holiday season as possible here in sunny Durham! The snow will help!

This is a different life than we expected, but it's an exciting one and dear sweet Errol has made it so rich and deep.

Your love buoys us through these rough seas.

Slow and Steady

Two steps forward and one step back = one step forward.

Merry Christmas

Errol the Day Before Surgery

Brother Owen had been hoping that we were going to be home for Christmas, but ever since the day of Errol's surgery, when Santa put in a guest appearance at the hospital - along with amazing presents, Owen's been hoping we'd spend Christmas right here in the hospital. It looks like he's gong to get his wish.

And here's an early Christmas present. Errol just got his foley tube out and the PCICU team is talking about extubating him in the morning. Whoot! Whoot!

We are moving at a slow pace, but everything is positive. Like Errol.

Ho! Ho! Ho!

Owen Waiting for Santa at Duke On Surgery Day

Errol in PICU

Errol is in the PCICU (Pediatric Cardiac Intensive Care Unit - picked a peck of pickled peppers) recovering from his surgery.

He is stable and taking small steps towards being 100% Errol (he's at about 35% right now). The goal is to slowly but surely take tubes and wires out of the Little Man, and so far we've gotten one of two chest tubes out and are aiming for an extubation (removal of the breathing tube) in a few hours. Unfortunately, there are still four central lines, one peripheral iv, pacer wires into his heart, a foley catheter into his bladder, and about twenty leads monitoring his vitals. One day he will be just Errol!

We've also learned a few things about Errol's physiology since the surgery.

Errol has arrhythmia (the top of the heart isn't communicating with the bottom of the heart and isn't beating just right) and if it doesn't resolve itself he will need to have a pacemaker put in (another heart surgery). We are, of course, hoping his heart will get back in synch on its own, as hearts often do.

We also found out that Errol's surgery was "touch-and-go" and that he needed a lot of support at the end of the case. All surgeries are dangerous, but this one took Errol right to the edge. At the time of the surgery, we didn't know how tight the margins were, and it's just as well; I don't think we could have borne it. Sometimes I feel like I'm living under water, holding my breath, unable to come up for air; or maybe I'm a fish living in this world, unable to go under for water.

It wasn't just the operating room that was scary. We also have had a few "serious" moments in the PCICU (say PCICU ten times) this morning where Errol's blood pressure dropped precipitously. We've been through some rough patches, but right now, Errol is stable and not feeling much pain.

Recovery is not a straight line, but as long as the trajectory is upwards, we can handle the dips.

And we will have plenty of help with the dips tonight. One of Errol's favorite nurses, Keyatta, from the Baptist Hospital PICU works at Duke now as a Nurse Practitioner, and she is going to be in charge of Errol's care tonight. Hooray! Talk about continuity of care...

We are very grateful for all of the love flowing from points north, south, east, and west.

We'll keep you updated and post much happier pictures next time.

Great News

Great news!
The surgery was a success!

The doctors lowered Errol's body temperature during the surgery to slow his bleeding and now they are warming Errol back up (350 for 25 minutes?) Errol is off the heart-lung machine and the surgeon is stitching him back up and he will soon be up to the Pediatric Cardiac Intensive Care Unit for recovery.

It's still going to be a long and bumpy road to full recovery, but Errol's heart is working on its own, and better than ever (while they were under the hood they fixed a leaky valve).

We feel all your love!!!
Now on to the PCICU!
More updates to come.
Ring them bells!!!!!!!!

Surgery update

Errol is in surgery right now.

Errol's surgeon, Dr. Lodge (who switched in for Dr. Jaggers because of a scheduling problem), has started the heart-lung machine which will keep Errol alive while they work on his heart.
It will be a while longer before they take Errol off the machine, but all is going according to plan, and thankfully, there have been no big surprises.
We feel the love!

Surgery has begun

Surgery

Errol's surgery is at approximately 6:30 a.m. on Tuesday morning. It will probably last about five hours.

Thank you for all the love!

Keep the love coming!

Errol's Family

We feel so much love from so many!

Owen was determined to see his brother again today. Errol was thrilled to oblige.

Owen wasn't the only guest. The Little Man received Grandmothers, grandfather, aunt, uncle, and the entire (all 7 of them) bakery staff in his royal suite. Errol loved the attention.

Errol's champion pediatrician, Dr. Hunsinger, drove two hours each way in the pouring rain to visit. Dr. Hunsinger brought a dose of optimism with her and insisted that Errol looked great and was going to be strong on Tuesday. She gave the whole family a prescription of hope!

And we feel the love, prayers, thoughts, dancing, meditation, light, laughter, and more love flowing in from all points! Keep it coming.

Think of Errol!

Errol is scheduled for open-heart surgery on Tuesday at Duke.

His doctors say that Errol's endocarditis (heart infection) has made this surgery much more dangerous than the open-heart surgery he had in August.  

The cardiologist said that we will be at Duke for another month if Errol survives the surgery.

We are devastated.

Think of sweet Errol.

Going Up?

A wise friend once told me that what she loved about living in New York City was the range of emotions she experienced every day. She should have moved into Duke hospital.

Today, after a lovely lunch in the cafeteria (just kidding) I walked past an XXL family, with kids in tow, slouching towards the elevator. We all climbed aboard, and as the elevator doors closed, a security guard rushed over and thrust his arm out, reopening the doors.

“Sorry folks. No kids allowed upstairs in the hospital.”

It’s true. Owen hasn’t seen Errol for two weeks. We even told security Owen was a 40 year-old midget with a close shave, but it didn’t work. We’ll try the old catapult next time.

The mother protested her child being bounced from the hospital, “But they let him in yesterday!” She protested.

Now, when you stop and think about it, the old ‘but I broke the rules before’ argument is pretty lame. “But officer, I killed yesterday!”

Which, of course, doesn’t stop me from using that argument myself. In fact, it worked nicely in the Ronald McDonald Room yesterday! Besides, I hadn't rollerbladed all week!

“That’s the rules, folks.” Said the guard.

“But his daddy’s terminal! He's not gonna last long!” Cried the boy’s mother.

“That’s the rules, folks.” Repeated the guard. And remember, when in doubt, say it again, and that's just what that guard did.

"That's the rules, folks." And the family got off the elevator, and, as far as I know, the boy didn’t get to see his dad.

Later, I saw a mother wheel her newborn son out of the hospital. How they got those wheels on that baby, I’ll never know but they sure were movin'! The mother and father were so proud. So full of love. Just starting out. The baby looked pissed. It was 40 degrees (just a wee big colder than inside mommy's belly.

That afternoon, a grinning man got on the elevator and asked all of us how we were doing. We all froze. What did he really want? Was he going to sell us something, start shooting, yodel???? Luckily, he didn’t yodel. Of course, the reason he asked us how we were doing was so we would ask how he was doing. Which is why sad people (and bears, for that matter) don’t ask elevators full of people how they are doing. They don’t want to be asked themselves.

But the category-five grinner wanted to be asked. No one wanted to be the one. To fall further into this intereview in reverse. But we still had at lest hree floors to go (if the elevator didn't stall, the hospital run out of power, and the seven of us test BMIs until we could decide which one to eat first. Arghhhh! So before we went down that road (that's where I live, by the way) soon enough someone begrudgingly obliged.

And how are you doing today?

He didn't have to think about his answer whic he gave full throated answer like a meuzzin leading a prayer.

"I'm so glad to be alive!" You don't hear that a lot, by the wasy, out in civilian world, its not the first time Iv'e heard it at Duke. It;s not the first time I've said it. So who was this man: cancer survivor? Now father? Owner of the patent to the Zhu Zhu pets? Whoer he was, he was alive, and he was happy. And we were too, at least for a moment. Even those of us who were sleep-deprived, hungry, sad, terrified, just a little gassy(sorry, crew), depressed, anguished. At least, just for a moment we all felt all of his joy coursing through our ears and eyes and bodies. Then the doors to the fifth floor opened and I headed off to Errol.

I ought to ride those elevators more often. Sometimes they go up, and sometimes they go down, but no matter what, they are always moving.

Whatever you do, just don’t get off on 0!

Santa Claus gloves up!!!!!!!

The holidays are an especially sad time to be in the hospital, but the nurses and doctors work hard to bring some cheer to the kids: Larry the bipolar bear (sometimes it doesn't work). Today, Santa and his elves visited the 5300 hallway of Duke Hospital with a cart full of teddy bears. I didn't tell them that Errol is Jewish. He loves his toy bear but the bear seemed a little depressed.

I'll order some Lexapro for the bear!

Merry Christmas!!!!!!!!!!!!!!!!!

It still looks like Errol will have his open-heart surgery on Monday. We'll keep you updated.

Open Heart Surgery Part Three, Part Two

We got bad news in the cath lab today. Errol's infection has done serious damage to his heart and he is going to need to have open-heart surgery on Monday. Dr. Jaggers (great name!!!) is going to perform a Fontan procedure (a repeat of the operation Errol had in August). This time, the cardiologists are going to hit Errol with some heavy duty antibiotics to make sure the infection doesn't return. We will be moving our base of operations to Durham on Monday and will remain here while Errol recovers - probably through Christmas. Poor Errol. Life keeps throwing him curve balls, but he is always such a trooper. He is a wonder!

Going Up and Going Out

Errol and I were footloose and fancy free for an hour today. Untethered from those damnable machines that keep him alive, we went straight outside!

I hadn't been outside in two and a half days and Errol hadn't been outdoors for a breath of air since he was incarcerated a week and a half ago.

It felt great. The warm air soaked into our pores, a salve for a week of sticks and stones.

When it comes to hospitals, people are usually a lot more happy going than coming. And as we sat on out bench for a luxuriously long moment we watched people scurry out of the hospital smiling, surprised by the balmy breeze.

Errol's heart cath is tomorrow morning at 11:00 am. Dr. Hill walked us through tomorrow's procedure. He carefully explained that safety would be the highest priority in the cath lab. He reassured me by explaining that he would never treat a patient any differently than he would treat his own children.

I asked him if he had kids.

He doesn't.

Hmmmm....

I can't wait 'til Errol is done with his catheterizations, blood draws, and late night x-rays and we can be outside of the hospital all the time.

We get to ride on the service elevators to get our daily x-rays. Service elevators are the VIP lounges of the hospital: sleek, exclusive, fast, full of gorgeous scantily clad women (ok, not the women part unless you count the patient in surgical gowns headed in for liposuction.) The first class status of the service elevators can tun the most lemony day into lemonade. As we headed down to the first floor this morning on the SERVICE ELEVATORS, I noticed a button for 0 floor that I had never seen before. I asked our transport assistant about the secrets of 0 floor. She had to tell me - we're bff since we go to x (that's short for x-ray) twice a day! She named her twins after me!

She wouldn't tell me.

I am starting to know the ins and outs of this place: its lingo, its rhythm, which food not to get from the cafeteria (none of it - not one bite if you ever want to leave on your own two feet), and which of the doctors are really doctors, and which are homeless people wearing medical gowns. It's nice to be an insider - even in a place you don't particularly want to be inside of, so I soldiered on and asked my transpo-hommies, "What is that zero button for?

"Uh, um, s s supplies." my mobile friend stammered.

She gave a nervous glance to her transport colleague who was also on the elevator.

He glanced back at her and cast his eyes down at the ground.

"What kind of supplies do they have down there?" I naively asked. Thinking of aspirin, bandaids, and Duke Medical Center bumper stickers (people don't put a whole lot of those hospital bumper stickers on the backs of their cars: OBX, BHI, DMC!!!!)

My transport friend looked sheepishly at her hands.

Her colleague looked around and then, when she thought no one was listening, bent down, and whispered in my ear, "that's the morgue."

Oh, that kind of supply: dead people, zombies, Sarah Palin. That's not my idea of a good way to get out of the hospital.

In the end, it was a swell trip to x-ray, and I learned something valuable: I will never, never, ever press the 0 button on the VIP elevator.

*I didn't really ask the doctor if he has kids. He does.

Breaking News

There is good news.

Errol has turned a corner. He's doing much better and is eating like a champ!

But there is bad news.

Somebody edited the bipolar bear.

Now Larry's just a polar bear.

But don't be discouraged, there's even more good news.

Errol got new eye glasses today, which makes him a total playah!

And the first thing he got to see with his new glasses was his beautiful mama.

And finally there is this news (not fun, but necessary).

Errol is going to have a heart catheterization on Thursday at Duke. The cath will be both diagnostic, to explain his effusions, and corrective, to coil his collateral vessels. The procedure should last about two hours and Errol's social secretary thinks he'll be home by the weekend. But don't count on it.

Wish Errol a safe catheterization on Thursday!

Banana Redux

Errol just finished the other half of the banana and ate an ounce of milk!!!!!!!

Go Errol! Go!

Banana-Rama

Errol just ate half a banana!!!!!!!!! Oh my god! One small bite for little man. One big bite for mankind!

I am soaring!

Bi-Polar Bear

During the holidays, the windows of Duke Medical Center are adorned with seasonal cheer. The window drawings are supposed to make people feel better, but the hospital is still full of sick people.

On a large fifth floor window up on the children's wing someone drew a large polar bear with big cheerful letters exclaiming, "The Polar Bear wishes you Happy Holidays!" A naughty person edited the drawing by adding "Bi" in front of "Polar Bear", saddling the poor mentally ill mammal with a pre-existing condition.

Up on the ninth floor the large windows look out on the helicopter pad! This is where the flights of hope land. Where they bring the sick for one last chance...

Just inside of the helipad, the windows are covered with big colorful ribbons above the names of various strains of cancer: breast, brain, and my favorite, testicular (which you, gentlemen, have a 1 in 300 chance of getting.) I don't know if seeing a list of cancers is supposed to make us feel better, less alone, or just grateful to be alive, but there were a lot more people hanging out with the manic-depressive uninsurable bear than with the parade of cancers.

As if the ribbons didn't create enough pathos, someone had carved out of the purple ribbon, "La vida is corta" life is short.

Sunlight seeped in through the cut out words. Further down the windows, someone has written Voltaire's instructions about what to do about it.

Errol knows about shipwrecks, and he certainly knows how to sing...

We go to the hospital to be born, and to die. The hospital hums with joy and sadness and final hopes. Errol is ever so slowly getting better. He's hardly eaten in the past two days, but his chest tube is out and he is hoping to fly home.

I'll be home for Chanukah

Errol's chest tube is now draining at a nice slow pace (a good thing), so the docs will probably cap off the tube, and if there is no more fluid output for 24 hours(ish), take the tube out. Whoot!!

They say a chest tube hurts like the dickens, but Errol (Mr. High Pain Tolerance) isn't complaining. He's also not eating or drinking at all (he won't even touch the tofurkey I made him). Luckily, Errol's on iv fluids so he's staying hydrated, but please, Errol, if you're reading this, make like a camel at an oasis and drink, drink, drink!

We don't know for sure, but we imagine that once the chest tube comes out (ouch), Errol'll probably start drinking and eating again. And (probably) once food magic happens, the docs'll send him home (please!!!) But you never know...

As for the near future, the cardiologists will either do a heart cath as soon as the chest tub comes out (which will extend our stay in sunny Durham) or, they'll send Errol home until he's kicked his endocarditis, and then bring him back for cath-o-rama later this December. How's that for definitive!

Stay tuned for more uncertainty.

I'll be home for Christmas?

Errol had another stoppage in his chest tube and his afternoon x-ray revealed a growing pleural effusion. The wonderful nurse practitioner unclogged his tube, yet again, letting lose another torrent of fluid, and making Errol feel better (see picture), and (finally) eat! They've just done another x-ray (number 20???) and we'll see what it shows (hope for clear lungs!!!!!)

It's been almost a week now since Owen last saw Errol (no kids are allowed to visit the hospital) and it's wearing on him. He was singing a Christmas song today and then suddenly the Christmas words were gone, replaced with "PICC line, PICC line, PICC line" over and over again. We try to get Owen to share his feelings and talk about Errol, and sometimes he does, but most often his feelings come out in surprising places.

Hopefully Errol will be home soon and "PICC line" will be replaced with a happier holiday song!

One step forward, two steps back

Errol's chest tube got stopped up today and a surgical nurse practitioner had to unclog it. After just a moment at work, a torrent of fluid came gushing out of Errol's chest. Losing all that fluid should make Errol feel a whole lot better, but we wish we knew why he had so much fluid on his lungs to begin with, and wether this will be an ongoing problem. To answer all our questions, Little Man might need another heart catheterization, which means that we will be spending a lot more time at Duke Hospital.

Errol is so resilient, and you can from his picture that Errol is trying to make the best of the situation, but he's had a hard week. Keep him in your thoughts!

Good News: The Chest Tube Is In

Errol's procedure is done! The chest tube is in, the fluid is coming out, and Errol will be going home in a few days. The good news is that the fluid is clear (probably no infection), the bad news is that this may happen again (this is a somewhat common consequence of Errol's last surgery).

The Pediatric Cardiac PICU nurses fell in love with Errol. When the nurses administered his versed (sedative) our little drug addict just laughed and laughed. The whole room fell for Errol.

Errol is a sweet and funny boy and we're happy that he's on the road to recovery.

And the winner is..........

Chest Tube!!!!!

The pediatric cardiothoracic surgeon is going to insert a chest tube into Errol's lungs tomorrow morning. Luckily, Errol will be asleep.

Poor Errol has had to endure a marathon battery of x-rays, ultrasounds, and Echos, a late night peripheral iv insertion, and an early morning rethreading of his PICC line (not for the faint of heart.) It's hard enough to watch, you can imagine how hard it would be to endure.

Hopefully, the chest tube will clear up Errol's lungs once and for all and we'll stay out of the hospital for at least the rest of the year.

Errol is incredibly brave. Think of him around 10:00 tomorrow morning.

What is the pleural of effusion?

We thought we were going home, but Errol's lungs have different plans. Errol has a pleural effusion (water on the lungs) and he's not going to get better until his lungs are drained as dry as the Atacma. The docs will decide this afternoon if the drainage will be achieved with meds (the patriotic way) or a chest tube (ouch!) The cardiology team will vote on lung management around two this afternoon and you can cast your vote on-line. Either way, we'll be at Duke tonight and we'll hope to return home tonight (in our imagination), tomorrow (with meds), or - most likely - Sundayish (with chest tube.)

We are feeling the love that you are all putting out into the universe (Errol says, "uh-oh!) Thanks for your thoughts, prayers, and on-line voting.

Little man is a fighter. He's been, stuck, x-rayed, and echoed more times than I'd care to remember. Hopefully we can get these lungs clean and Errol can get back to running the country.

Water water everywhere and not a drop to drink

Water is central to the rituals of many religions. It is thought to have mystical properties.

Devout Hindus purify themselves by bathing in the holy waters of the Ganges.

Pious Christians are dunked or sprinkled in water as part of their spiritual rebirth.

The Hopi, Anasazi, Navajo and other American Southwestern tribes practiced elaborate rituals to produce rain.

Seventeen years ago, in the highlands of Chiapas, Cary and I witnessed Maya worshipers rolling chicken eggs along the village of San Juan de Chamula's Catholic church's dirt floor with a Coke can (I'm not making this up-don't tell the Pepsi Cola Bottling Company!) Water (or Coca-Cola, in Chiapas) is central to spiritual and material life.

Last night, our little Errol went through a rebirth ceremony of his own.

The great frustration of dehydration is that when we become dangerously dehydrated, like Errol has been, we can not take the very liquids that our survival requires. Over this past treacherous Thanksgiving week, Errol has only consumed a precious few ounces of liquid a day, and has become more and more withered.

To stop Errol's precipitous drift away from health, the Duke doctors pimped out his PICC line and bombarded him with potasium chloride (zero calories, and that same great Coke taste!)

After only a few minutes, the change in Errol was unmistakable, and after a few hours of working their way through the little man's body, these fluids of life were reintroduced to the world in a tsunami of urine that just about drowned the little man - next time I'll ask them to outfit Errol with a flotation device.

The bed was wet, but Errol had been cleansed! After we cleaned Errol up, and repaired the levees, Errol and I slept more soundly than we had in the past two weeks. Hallelujah!