Hearts Beat in the Park

Today we were surrounded by the tight embrace of family, friends, and community at Seeds of Love for Errol's Heart Beats in the Park. Under a bright blue sky, folks were led through a metabolic workout (hubba hubba), yoga, and tai chi.

When Errol arrived (fashionably late) he was given a hero's welcome. It's amazing how much joy one little boy (with one big smile) can bring to so many people, and it's wonderful to see the heart of a community grow so big.

There are more Seeds of Love for Errol events coming up soon.

Here's an interview I conducted with Errol where I asked him how he liked the Hearts Beat in the Park festival.

Expecting the Expected

Great, great, great news today from Dr. Hines: Errol's wound is healing nicely!
With Curveball, we've learned to expect the unexpected (which makes the unexpected actually not unexpected and thus....nevermind)
We've all let out a huge sigh of relief and we finally feel like we can start our lives back again. Which is good since school has started for all three boys, Cary is back baking, and the dogs are chasing the chickens around the back yard.
Here's to expecting the expected.
Time for more salsa dancing.

Soothing Healing

Errol is home and healing. Hooray! 

We decided to celebrate our homecoming with some calm and soothing post-open-heart surgery therapy: salsa dancing (Errol in my arms, not the other way around). We bobbed and weaved our way through he living room with Errol smiling and laughing and Cary and Owen dancing around us. Muevelo! 

Errol's wound seems to be healing and he's feeling better each day. Pretty soon Errol will be more like his old self than he used to be (???) In fact, I think Errol is on the cusp of having more oxygen in his blood and thus more energy than he did before the surgery. Errol 2.0.

We are so happy to have Errol at home and on the dance floor. We try to savor every moment with him.

Headed Home

Errol is headed home (again).

We'll hope his wound heals up quickly.

Wish us luck. 

Wounded Warrior

Errol is still in the hospital and has slept most of the day. He's not comfortable, but his wound has stopped seeping. 

Errol's medical team has concluded that Errol's wound is not infected (hooray), but we still can't explain why Errol's wound reopened instead of healing up properly. The other good news is that Dr. Hines doesn't think that we will have to go back into the operating room to close the wound, but that we can put a VAC on Errol instead.

Life has hurled one medical insult after another at Errol, and he's still the sweetest, happiest person in the universe.

Back in the Hospital

Errol is back in the hospital (this picture is from Errol in the emergency department tonight). His wound has opened up and it's infected. The doctors have put Errol on a two day series of antibiotics and if that doesn't work they will put him on a VAC (wound vacuum device) to knock out the infection. Dr. Hines says that Errol's heart and lungs look good and that he thinks that part of Errol's syndrome must be an inability to fight infections (three surgeries, three infections). We will keep you updated on Errol's progress. 

Climbing Down Mountains & Headed Home

People keep saying that Errol looks better than ever, that he's more active, that he's got more color in his face, that he should pull over and let his dad drive. Keep saying it! We are thrilled at our tough little man's recovery. Now that his blood is more oxygen rich, we hope for more progress ahead.

When mountaineers ascend high peaks and can't get enough oxygen in their blood they suffer from hypoxia which causes 

• headaches, breathlessness, 
• 
  
• fatigue
• 
  
• nausea or vomiting
• 
  
• inability to sleep
• 
  
• swelling of the face, hands
• 
  
• and feet
• 
  
• and general weakness

I feel like Errol's just come down off the highest mountain. Let's see what you can do with all that oxygenated blood, Little Giant!

Happier than ever

It happened tonight! Errol's blood is getting more oxygen than before the operation and Errol is funnier, sweeter, and happier than ever before. How can you be happier than happiest? Just ask Errol.

Homecoming

Only a week and a day since his surgery, Errol is home and healing. Errol’s operation was very successful and has significantly increased (and will continue to increase) the amount of oxygen in his blood. Our tremendous hope is that his more oxygen-saturated blood will give him greater muscle tone and higher cognitive function that might just give him the strength to walk, eat normal food, and perhaps even talk. We don’t really know exactly how high his blood-oxygen level will go and just exactly what it will lead to, but we can hope.

We carried Errol outside into the warm evening air and celebrated his homecoming with sparklers and Roman Candles. A dragonfly alighted on the flowers just beyond us, Cary lit Owen’s sparkler, and the dragonfly spread his wings and flew off into a sky filled with blazing sparks.

Homeward Bound

RIng them bells!

Errol is headed home!

Thank you all for surrounding our little family with so much love and kindness.

We are so excited to take our beloved Errol home!

PROGRESS

It's been a great day. Errol has been drinking juice, taking his meds, his last iv is gone, his nasul canula is out, and we even took him on a spin in his wheelchair around the 6th floor. As the doctor said this morning, "Errol has turned a corner." Let's hope our house is right around that corner. The doctors even ordered a portable oxygen machine that Errol will take home that will be delivered tomorrow morning. We are so thrilled about Errol's progress that we are beginning to think the unthinkable, that he is going to leave the hospital soon!!!!

Errol the Fighter

Hooray. At dawn, Errol took three ounces of juice and two important meds!!!! Yee haw. Let's hear it for Errol, the fighter.

Our Little Champ

Our little champ just ate two more ounces!!!!!!!!!
Whoooooo Hoooooooo!
And now Errol has fallen back fast asleep.

Two Ounces!!!!!!!!!!!!!!!!!!!!!!!!!!

Errol just drank two ounces of apple juice and fell fast asleep!!! This is a huge step forward. If we can get a few more ounces in him we can avoid the NG (Not Good) tube (which would be a big step backwards). Let's hear it for the Little Man! More (hopefully positive) updates (of gallons of gobbled juice) will follow...

A Step Backwards

Errol's last remaining iv blew this afternoon (it happens sometimes) and we spent a bad two hours trying to get a new iv in him. After three different nurses (including the one who saved his life back on day one of his life) gave him eight or nine nasty needle sticks and painful subcutaneous explorations we gave up on trying to find a vein. Errol didn't cry but once.

Errol is out of the PICU but he's not out of the woods. We can't get him to eat, drink, or take his medicine, and without an iv in him or a nasogastric (NG) tube down his throat and into his stomach, Errol can't heal. Errol is exhausted and has fallen into a fitful sleep (I can't imagine what he is dreaming about), and we're going to evaluate his progress in the morning and decide what steps to take next. Let's hope things turn for the better. Thanks for hanging in there with us on this bumpy ride.

Errol's Battle Scars

This is a look at Errol's wound from his open heart surgery. Errol is such a trooper! We're only four days out from his open heart surgery, and he must be in tremendous pain, but since Saturday he's only been on ibuprofen for pain, and he complains less than me. Give it up for the Little Man!

Strong Errol And Strong Mama

Errol's New Digs

Hooray! Errol is out of the PICU and in a regular room! They have taken out his central line and the only thing tethering him now is his nasal canula (oxygen) and the IV in his left arm. We are so happy that Errol keeps getting better and we are so very fortunate to be surrounded by so much love! Thank you, thank you, thank you all!

Back in Mama's Arms

Errol is having a good afternoon. He seems to be over his nausea and he's been smiling and playing peek-a-boo. The nurses had to suction out his nose and mouth but it's helped his breathing and we still hope to have him out in a normal room tomorrow. One of the best things we can do is to hold him up and try to get the gunk out of his lungs. He certainly doesn't seem to mind being in Mama's arms! Who would?

PICtures from the PICU

The doctors feel good about Errol's progress, but we'll probably spend one more day in the PICU before heading out into a regular hospital room. 

A good night in the PICU

Errol had a good night. He kept his liquids down, responded well to being weaned off his oxygen, and, most importantly, slept well! I think they might just move us out of the PICU and into a regular room. We'll know after the morning rounds.

One Small Step for Little-Mankind

Errol's chest tube came out (you don't want to see the pictures) and so did his arterial line! One step forward. 

Unfortunately, Errol has been really nauseous today and he's had to work really hard just to keep liquids down. One step back. 

Luckily, the step forward was bigger than the step back, and the doctors think that once Errol gets the anaesthesia out of his system he'll feel a whole lot better. So will we.

To Do List

1. Move out of the PICU and into a regular hospital room
   

It looks (knock on wood) like we might just complete our list tomorrow.

Right now Errol is just a few feet away from me, lying in his bed in the PICU Hilton, sound asleep. 

The Road To Recovery

A good morning, so far. The doctors are pleased with Errol's progress and are going to take out his chest tube, which will make him feel better and allow him to sleep on his stomach, and his arterial line, which will allow him to put his favorite fingers in his mouth. These are all tiny baby steps on the road to wellness, but Errol is healing! 

Long Road Ahead

Errol is still in the PICU. Although his Friday started well, his recovery slowed down a  bit today. If we can get Errol to keep his food down and get his chest tube out and we will be on the road out of the PICU. We'll see what tonight brings. 

Recovering

Errol is doing great! Doctor Hines came by on rounds this morning and wouldn't say a word about Errol because he didn't want to jinx his great progress. The color is coming back into Errol's face and he is looking stronger and stronger, in fact, Errol took one of his three IVs out this morning. We've been feeding him bottles of juice and goat milk and its made him very, very happy. The catheter and his pacemaker will come off today and we'll hope to pull his chest tube this evening. We are thrilled at our sweet boy's healing and feel so lucky to have him.

Errol is sound asleep and feeling his narcotics. He's healing already. All is well in our little room.

Fifteen minutes ago, the boy two rooms down passed away. 

I wouldn't have known if I hadn't asked about the partition that suddenly went up outside their room. The nurses hardly paused, the day and nigh shifts are changing, the PICU hums along with energy. 

You can feel the life here on the edge of death.

Award Winner

Errol's nurse said that he was the best urinator of any heart baby she had ever had! I told her he had been practicing. Go Errol! We've already hit a couple of goals here in the PICU. Errol has gotten his breathing tube out, he's off insulin, and we're hoping to get him out of the bed and in arms today. The doctors and nurses are extremely happy with Errol's progress and so are we. We'll keep you updated.

Progress

Errol is resting well and recovering beautifully! The doctors and nurses keep saying that his numbers are great and that he's making wonderful progress. Still, as "perfect" as his vitals are, I'll feel a lot better when he smiles at me.

Curveball

Errol is keeping us on our toes. After a .25 mg injection of morphine Errol looked up at me, his eyes rolled up, and the color drained out of his face. Alarms started going crazy, the word DESAT flashed on the monitor, and six nurses, respiratory therapists, and doctors materialized out of nowhere. Errol had stopped breathing. 

The respiration therapist threw a breathing bag over Errol's mouth and pumped and pumped until he started breathing on his own. The PICU staff is amazing, they didn't even flinch, they brought Errol back from the edge, and then went right back to work like it was no big deal. 

Apparently, the narcotics put Errol and his lungs to sleep. There doesn't appear to be any structural problem with Errol, just a case of a little too much morphine. The nurses and doctors are keeping an even closer eye on Errol, and we'll all breath a little easier when the night is through.  

Recovery

Errol is in the Pediatric Intensive Care Unit (PICU) recovering from surgery. His recovery has been excellent so far, and we've already passed a number of important post-operative milestones. Errol has tons of awful tubes coming out of his body, and it's terrible to see him in pain, but we are making great progress. Thank you for all your thoughts, prayers, messages, and hope! We'll update you as we go.

Surgery Update

Errol is still in surgery but off the heart machine. So far so good. We'll hope to be out of surgery within the hour. More updates later. Thank you all for your support and love.

Surgery

Errol's surgery is scheduled for 11:00 am on Thursday, August 6th. During part of tomorrow's surgery, Dr. Hines will stop Errol's heart, perform a procedure, and then restart Errol's heart. The whole operation should last about four hours, and Dr. Hines made the whole thing sound like a cake walk, but we are totally on edge. Errol, of course, had one of his happiest evenings in memory. Think of Errol tomorrow. 

Pre-Op

Errol's pre-op visit with the amazing, Dr. Hines is tomorrow, Wednesday, August 5th at 1:00. We'll get more details about Thursday's surgery then. Our hearts and eyelids are heavy. We hope Errol's doctors are getting all the sleep we are losing. Errol, of course, is happy as a clam. More updates to follow...

Life With A Celebrity

Going around Winston with Errol is like being in a rock star’s entourage (I guess).

People I’ve never laid eyes on come up and ask Errol how he’s doing (I always answer for him, which may be a bad habit to get into. Then again, if I perfect my ventriloquism it could lead to some interesting conversations.) Errol is definitely one of the biggest celebrities in town and it's rare we go out without a fan stopping him to say hello. 

Recently, on a trip out of town, we stopped for lunch at a cafeteria. As we snaked through the line towards Errol’s first encounter with Jello (he loved it!) many of the patrons smiled, waved, and stopped to talk to him. As a sweet old grandmotherly woman smiled at him, Errol stared blankly into space. I threw my voice and Errol broke his silence, “What are you looking at you, you old bat?” The woman stared back in disbelief and Errol added, “Heard of Botox, Granny?” Errol smiled sweetly.

OK, so I didn’t really throw my voice. One day.

Back at the cafeteria, as our fellow patrons nodded and smiled, I noticed one older woman who kept wistfully looking at Errol. As she passed us she smiled and said, “He’s special.”

“Yes he is.” I said.

“I had a special boy.” She sighed. Her eyes moistened.

“What was his name?”

“Matthew.”

She looked intently at Errol.

“How old was he when he passed away?” I asked.

“He was 32.”

We looked at Errol. She thought for a moment.

“How old is he?”

“Three.”

“They really are so special.” She said.

“Yes they are.” I agreed.

We looked at each other and I looked at her husband who couldn’t look at Errol. She looked back at Errol and then they were gone.

As we finished our meal, I noticed them sitting a few tables away, not talking, stealing glances at Errol.

The world can be so heavy, but it’s lighter when there are others to share the burden with you. 

Some kid

We are full of anxiety and trepidation as we crawl towards Errol's August 6th surgery, but Errol isn't worried. We try to learn from Errol, but still we worry day and night. Last night I dreamed that Owen and I were taking an elevator to get to Errol's hospital room. We went up, and up, and up, past the eightieth floor but there wasn't a button for the floor Errol was on. Then we went to a second hospital, and then a third and kept riding up, up, up, never reaching Errol.

On the other hand, the other day we took Errol and Owen to see Charlotte's Web. When Errol thinks a movie is really funny (most of the time) he chuckles, then turns around to look back at us to make sure we are getting the joke. We got it. He is a joy. 

Errol Milner Clifford