Open heart surgery part 3

We've just learned that on the morning of Thursday, August 6, Errol will have his third open heart surgery. Wish him well!

Can You Sing?

Errol’s favorite book is the Nobel Prize winning, Can You Sing? By Lisa Lawston, illustrated by Ed Vere.

The entire text consists of:

Please sing me a song.

Rrraaahh!

Rowf!

Quack, quack!

Ork, ork, ork!

Ribbit!

H-Hoo! Moo!

Hiss!

Ow-ooo!

Snort!

Thank you. Good night!

If I asked Errol to construct his perfect day it would go something like:

Milk, Can You Sing?, milk, Can You Sing?, banana, Can You Sing?, Can You Sing?, banana, Can You Sing?, Can You Sing?, milk, nap, milk, Can You Sing?, milk with a simultaneous reading of Can You Sing?, grab hair, banana, Can You Sing?, Can You Sing?, Can You Sing? , milk, sleep, dream about Can You Sing?

Can You Sing? is always wonderful to read (three time in five minutes, tonight) and Errol’s reaction is immediate, loud and joyful: squeal!

 

Errol's brother Owen is almost six and he is growing up.

Sunday was a cool and overcast afternoon. Cary, Owen, and I sat around the living room table and played Uno. Owen won three times. It was one of those surprising moments you want to stretch on and on (these moments are never planned). It’s this joy that I hoped for when Cary and I dreamed of parenthood. And as Owen grows up, there are more and more of these moments.

Errol is not growing up. Although he is three years old, in most ways he is still an infant (and probably always will be). Errol brings so much joy into our lives (Rrraaahh! Snort!), but he also brings guilt, sorrow, limitations, anxiety, and he’s getting harder and harder to lift (38 pounds!) Having a severely disabled child with a deadly heart defect isn’t all it’s cracked up to be.

It’s good to have an anchor in a storm, but sometimes I want to sail out of this little cove into the wide and beautiful sea.

 

 

 

Errol Surgery #3

Errol's third open heart surgery has been rescheduled for the second week of August. We'll keep you updated as we learn more specifics about the time and date. Thanks for your thoughts.

Hospital Update

Errol had his heart catheterization today. He is out of surgery and is sleeping off the anesthesia in his hospital room where he will be staying overnight. The surgery went well and soon we should have a good idea when his next surgery will be. I'll update you as more information becomes available. Thanks for your many thoughts of Errol today. We feel the love all the way up on the 11th floor of Baptist Hospital.

Seeds of Love for Errol

Tomorrow, we return to the hospital for Errol's heart cath. We face tomorrow full of anxiety, trepidation, and sorrow, but we do not go into these hard times alone.  Seeds of Love for Errol is a community project that is a beacon of light for our family. We would be lost without our family and friends. They light our way. 

The windows of my soul I throw

Wide open to the sun.
~John Greenleaf Whittier

Out of the Swallow Study and into the Heart Catheterization

Today was a good day at the hospital for Errol. He passed his swallow test with flying colors (he’s been studying hard), and the technicians were so impressed with his swallowing abilities that they have recommended a decrease in the thickness of Errol’s foods (thin is the goal). The goat’s milk worked! We’re ecstatic about Errol’s progress and attribute it the removal of dairy from his diet. Mad props are due to Sarah Girard and Dr. Christiaanse for their astute diagnosis. HOORAY! 

But we aren’t done with Baptist Hospital, and will return there at 7:00 a.m. on Friday morning for Errol’s heart catheterization. Dr. Williams, one of the pediatric-cardiologists (a cardiologist for children, not an eight year old cardiologist), will insert a microscopic camera into Errol’s femoral artery (ouch) and then up, up, up to map out his heart. The heart cath is a minor procedure compared to July’s open-heart surgery, but major enough to make us anxious as hell. And this is one of those times it’s good that Errol doesn’t really know what’s going on until it’s going on. The heart catheterization is considered out patient surgery, but with Errol (Curveball, to the cardiology staff) we can usually count on quintupling the length of the predicted stay. Needless to say, we are packing our suitcases for Friday. We’ll update this blog as soon as we have news from Friday’s procedure. Wish Errol luck.

Errol's amazing teachers

Three years has meant three amazing classrooms at The Children's Center. Here is The Little Man with the wonderful Ms. Jennifer who is incredibly observant and probably reads Errol better than anyone in the world besides his mother. His other teacher, Paula (who is not pictured) treats him like he is her own son! We could hope for nothing more for Errol! 

Every year we cry over Errol's leaving his classroom/home (Anne, Audrey, Paula, Karen, Tamara, Susan!!!!) and every year he gets placed in another stimulating and loving environment.

Errol adores his teachers and so do we!

Ockham's Razor

Ockham’s razor is a principle of succinctness that proposes that the simplest answer is usually the best. 

Since Errol was born three years ago we’ve been trying to figure out how to ameliorate his reflux, which has recently worsened. Because of his reflux, Errol wheezes constantly, throws up every other meal, drools profusely, and has been waking up throughout the night. We’ve tried all sorts of medicines and recently even considered a surgical procedure to contain Errol’s worsening reflux, but nothing has really worked. Finally, a few weeks ago, in desperation, we took Errol to a gastroenterologist. The doctor asked few question, proffered no solution, and offered  little hope, “It will get worse.” He cautioned. 

Errol worsened, and we became more and more anxious.

We took Errol to see Dr. Christiaanse, his developmental pediatrician. She puzzled over his reflux and asked lots of questions about his diet. She called in a dietician and they worked through a number of scenarios. Finally she asked, “Have you tried goat's milk?”

We hadn’t.

We should, she said.

We did.

It worked. Errol has had a dramatic change. He is strong and healthy, and his wheezing and congestion have all but disappeared.

The answer was simple. It just took a smart person to ask such a basic question.

We are overjoyed. So is Errol. 

Errol goes for his barium swallow study tomorrow. (Looks like he's undertaking his own special swallow study in the picture above.) Wish him well.

Seeing

Yesterday, Errol embarked on a tour of all of the nation’s doctor’s offices with a trip to Greensboro to see his optometrist, Doctor Young (#853). Today, Errol continues his journey with a visit to his developmental pediatrician, on Monday, he makes a call on his dentist, two Wednesdays later he has his barium swallow study at Baptist Hospital, followed two days later by his heart catheterization. A medically busy time, even for the little man.  

On Saturday, our dog, Waffles kicked off the celebration by eating Errol’s signature eyeglasses. Bad dog. Luckily for the doggie, Doctor Young said Errol needed new glasses anyway.

Dr. Young also had bad news for us today. Errol has become much more nearsighted since his last visit. His nearsightedness could stabilize, or it could worsen, possibly causing a detached retina, which, untreated, would leave Errol blind. We have to keep a keen eye on his eyes so that we catch any detachment. Otherwise, the consequences would be catastrophic.

We hope Errol's nearsightedness stabilizes, and we will be watching his eyes like hawks to make sure we catch any problems that develop.

Think of Errol.

Errol Blossoms

Errol is feeling a whole lot better now. Thanks for sending the love out to the universe for the little man!

A lot of you have been thinking about Errol a lot lately. Here is a video we took a few weeks ago.




A lot of people feel sad for us since Errol is disabled. The white flakes on the ground in the video look like snow, but they are actually beautiful cherry blossoms.

An Update on Errol's Health

We went to see Errol’s pediatrician, Susan Hunsinger (Amazing!!! Brilliant! Compassionate!) last Friday and she diagnosed a return of pinkeye, and a new case of the croup. She gave him more steroid injections (bye-bye baseball career) for his croup and new meds for his eyes. Poor Errol. And through all of his sickness, exams, drops in the eye, and shots in the thigh, he doesn’t complain nearly as much as I do.

Despite the new meds Errol wasn’t getting better. And then Errol woke up early Tuesday morning in a pool of his own blood. He’s been in a lot of pain lately, hasn’t wanted to eat much, and has been drooling and grinding his teeth a whole lot. So we went back to the doctor on Tuesday about that blood and Errol was diagnosed with an ulcer in his esophagus (which accounts for the discomfort and the blood). So we’re on new meds (an antacid and an ulcer coating medicine) that will make him feel better, and we are going to Greensboro on Friday to see a gastro-intestinal doctor (yes, the esophagus is gastro-intestinal – who’d a thunk it!) 

The G-I doctor wants to go in and scope the ulcer, but that requires a procedure with local anesthetic administered through an IV and any time Errol gets on an IV it’s bad news, infections, and a stay in the hospital. We are trying to weigh the costs and benefits of the procedure. Errol and Owen don’t like the idea either.

The new medicines (added to his Coumadin, aspirin, Zantac, and vitamins) are making Errol feel better, but his brother Owen is, understandably, nervous.

Last night I asked Owen how he was feeling, and he said, 

“I’m nervous, Daddy.”

I asked him what he was nervous about,

“Errol going to the hospital.”

I told Owen that it wasn’t going to be a long hospital stay like last time and asked him what would make him feel better.

“I’m going to make Errol a book, Daddy.”

Last night Owen made an I Love Errol book. He wrote loving words and drew beautiful pictures on a few pages of paper and then stapled the book together.

Owen loves Mama and Daddy and Errol, Owen wrote, over a picture of the whole family together in our house.

It’s a long road, and nobody wants Errol to get well more than Owen.

Gold Medal!

Errol and Owen go to a wonderful school with great teachers who really care about kids. Sometimes the teachers give me mean looks as I walk past their classrooms in the morning.

Owen is really competitive and the best way to get him to do something is to challenge him.

“I’m going to get to the car first, Owen.”

“No you’re not, Daddy!”

We compete for gold medals in tooth brushing, car entering, and just about everything else we do.

“Owen, I’m going to brush my teeth before you!

“No! I’m going to win, Daddy!”

 Owen wins the gold in every event, and Errol just laughs.

But why do those teachers give me mean looks?

Errol rode horses yesterday at Riverwood and I got to go with him (photos and video coming soon!) 

The Little Man looked sharp as he rode Fritz (German horse?) across the wind-swept plains (riding ring). I remember how excited we got when Errol first flipped from his belly to his back, and here he is, at age three, riding a horse (winning the Derby!)

I took Owen to school this morning. We dropped Errol with his new teachers, Ms. Jennifer and Ms. Paula and raced off to Owen’s class. Errol was in first place as he rounded the bend but I was breathing down his neck. Just like every morning we raced past classrooms and up the ramp towards Owen’s classroom.

 “I’m going to beat you, Owen!” I yelled as I raced behind him.

 “Don’t beat me, Daddy.” Owen said.

The special education teachers heard our yells.

“I’m going to beat you again, Owen!!!”

“Don’t beat me, Daddy!” Owen pleaded

The teachers shook their heads.