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2003 Journal Links

Oct 26th - Archie is born
Oct 31st - Today, Archie is five days old
Nov 1st - We called the NICU at 3 a.m.
Nov 3rd - Archie's billirubin is down
Nov 4th - Today was Archie's due date
Nov 6th - Yesterday was the most trying day of our lives
Nov 9th - I think we knew that something
Nov 11th - Good day, bad day
Nov 13th - Archie looked great this morning
Nov 16th - If prayers were audible...
Nov 18th - I got to hold my son today
Nov 19th - John is back working again
Nov 20th - Archie slept all day
Nov 22th - I think I know what it’s like to be deaf
Nov 24th - Archie decided to stop fighting the ventilator
Nov 27th - Thanksgiving At the NICU
Nov 28th - John held Archie tonight
Nov 30th - If Archie doesn’t like something, he let’s you know
Dec 3rd - Archie will go for his first plane ride
Dec 5th - Tomorrow Archie will travel to Charleston, to the city where his father was born
Dec 8th - We got up extra early
Dec 10th - Although I spent the entire day at the hospital...
Dec 14th - The doctors attempted to extubate Archie twice
Dec 15th - We’re going to buff ‘em and shine ‘em up
Dec 17th - Santa Claus introduced himself to Archie today
Dec 18th - Archie is doing well
Dec 19th - Archie is continues to do well
Dec 23rd - It is Tuesday morning
Dec 26th - “Are you sure you’re Archie Moore?”

2004 Journal Entries

Jan 4th - John is holding Archie and feeding him his bottle
Jan 11th - We dressed him in a light blue sleeper
Jan 14th - Oh, how I've missed Days of Our Lives
Jan 18th - Patient & Family Satisfaction Improvement Survey
Jan 20th - Archie discovered his hands last weekend
Jan 15th - Babies like this
Jan 29th - Archie Moore is a flirt
Feb 11th - I'm watching Archie study his fist
Feb 23rd - Guess who gained eleven ounces his first week off Portagen?
Mar 2nd - My throat began feeling raw yesterday afternoon
Mar 10th - Tummy Time
Mar 15th - I hate those machines!
Mar 31st - Archie was not interested in his early intervention therapies today
Apr 13th - Well-baby check-up
Apr 21st - Today Archie's world got a little bit bigger
May 7th - It's difficult to write
May 30th - I took Archie to the CDS yesterday
Jun 20th - I know I don't update my journal as frequently as I once did
Jun 29th - We Achie to Budka's
Aug 26th - Archie fights sleep with a fierce tenacity
Sep 12th - Yeah, I know. I need to post more
Oct 26th - Today you are one

 

Later this week, Archie will go for his first plane ride
by Anne Moore
12/03/2003

Later this week, Archie will go for his first plane ride. He’ll be flying rock star style, in a Leer jet, accompanied by a crew of professionals trained to answer his every whim.

“When they come to take him to Charleston, the crew will march in here dressed in jump suits,” Dr. Ronacher, one of Archie’s pediatric cardiologists, explained. “As soon as they take Archie out of the building, he’ll be the property of Charleston.”

“The jet has everything the crew will need to sustain Archie,” he continued. “And the jet has satellite telecommunication equipment to enable the crew to talk to us and to Charleston to make decisions in air, if need be.”

Although we do know that our little man is going to Charleston this week, we’re unsure if MUSC is sending for him Friday, Saturday or Monday. Archie’s travel day will be determined by medical priority, and as hard as it is to believe our little baby who is in “serious condition” and “urgent need” of surgery, isn’t as hard-up as they come. Once Archie arrives at MUSC, he’ll be evaluated by a new team of doctors and nurses. The results of his evaluation stacked up against the condition of the other patients in the cardiac intensive care unit will determine Archie’s surgery date.

During rounds on Monday, I met Dr. Wells, Archie’s newest neonatologist. “Mom, what’s your understanding regarding Charleston?” he asked, quizzing my ability to retain and interpret information.

“If he’s not off the vent, he’s going,” I answered, gesturing toward the machine beside Archie’s bed. Dr. Wells looked over the top of his glasses at me.

I knew it was time to finally acknowledge that Archie’s body was ready to face his inevitable surgery. I crossed my arms over my chest, took a deep breath and became my son’s advocate. “Since he was born, we’ve been giving Archie a little oxygen assistance, and then taking him off it. He does great for a day or so and then he crashes. I don’t want to take him off the vent and see that happen again. What happens when we finally push him too far?” I nodded at the doctor. He nodded back. We were in agreement.

“Fix him,” I ordered.

Dr. Ronacher came by to examine Archie later that same day. “I know you have some concerns and questions,” he stated.

“I do,” I replied and then launched into the same speech I had given Dr. Wells earlier that morning. I punctuated my final sentence by rocking back on my heels.

Dr. Ronacher assured me that Dr. Horne was discussing Archie’s case with Dr. Atz in Charleston, and that all three doctors hoped to have an answer for me on Tuesday.

Late Tuesday afternoon Dr. Ronacher walked into Archie’s room. “I heard Archie extubated himself again and that he didn’t tolerate it well.”

We told him that Archie had actually extubated himself twice on Monday. “Even without failing the extubations, Dr. Bradley and Dr. Crawford are ready to see Archie in Charleston,” Dr. Ronacher explained. “And they’re going to send for him as early as the end of this week, as late as this weekend. I wanted to prepare you for that.”

John and I looked at each other, wide-eyed. I was holding the baby on my lap. He had been sleeping peacefully until Dr. Ronacher walked into the room. Archie had managed to maintain his stats for days, even on the occasions when he had extubated himself. But as soon as the doctor began talking, Archie squirmed in my arms, tossing his head and arching his back as he fought for air. Dawn watched, lunging for the baby as his blood oxygen levels dropped into the 60s. “Does he do this all the time?” Dr. Ronacher asked.

“I think he’s just trying to tell you he’s ready,” I replied. Archie’s nurse Sandy exclaimed that she was thinking the same thing.

“Listen, buddy, you don’t have to do this!” Dr. Ronacher joked. “I’m on your side!”

After finishing his rounds Tuesday night, Dr. Ronacher returned to the NICU to educate John, my parents and myself on the intricacies of Archie’s surgery. He sat down with us in front of a computer at the nurse’s station and showed us a Web site which illustrated Archie’s heart defect, as well as the surgical repair he’d receive. I noticed that two women sat with a baby in a room adjacent to the nurse’s station. They were listening to our conversation and looked horrified by what they were hearing. It was then that it occurred to me just how far removed from normal Archie’s welcome to the world has been.

Dr. Ronacher spent an hour and a half discussing all of our concerns with us. He even breached the topic of “the ‘d’ word,” as he called it. “We’re all thinking it. You’re wondering about it. It’s best just to address it and get it out of the way,” he stated. Turns out that MUSC’s success rate for Archie’s surgery is above the national average, and that our little guy has a great chance of coming through with flying colors. “And let me just say that if my son or daughter needed heart surgery, I would not hesitate at all to send them to Charleston. They have an excellent program,” he assured us.

Dr. Ferlauto, who was the night on-call doctor for the evening, sat in on the conversation, asking questions and inserting information when appropriate. When Dr. Ronacher finished, Dr. Ferlauto thanked him for taking the time to educate him on Archie’s condition and the necessary surgery. I knew very well that Dr. Ferlauto didn’t particularly benefit himself from the education session, but rather was participating for our benefit. I wish I could tell Dr. Ferlauto I’d like to shrink him down to pocket-size and carry him with me always.

Before leaving the NICU, John and I went back into Archie’s room to wish our little guy good night. “You’re going for a plane ride, buddy,” John told him.

“They’re going to fix you up, little guy,” I promised.

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