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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

 

The doctors attempted to extubate Archie twice
by Anne Moore
12/14/2003

The doctors attempted to extubate Archie twice. He failed both attempts.

The first attempt at extubation was made Thursday evening. John had rushed down to Charleston earlier that morning after I had received an early morning phone call from Dr. Hlavacek. The MUSC hematologists/oncologists (hem/oncs) had reviewed Archie’s blood smear and panicked when they identified twenty-some blasts from the baby’s blood sample. Dr. Hlavacek wanted me to know that the hem/oncs were interested in extracting bone marrow from the baby. John and I didn’t feel a bone marrow procedure was in Archie’s best interest, so we spent Thursday morning encouraging the MUSC hem/oncs to contact their Greenville counterparts, Dr. Hayes and Dr. Stroud. Dr. Hlavacek had called John and me to arms, and we were doing our best to advocate for our son.

Dr. McQuinn summoned John and me from the ICU waiting room late Thursday afternoon. “We’ve extubated Archie. We aren’t expecting great things, but we have to give him a fighting chance,” he explained. The doctor escorted us into the PCICU, explaining that we only had a short time to visit as another baby was soon expected back from the operating room.

Dr. Hlavacek was standing at the foot of Archie’s bed, his arms crossed as he studied the baby. Robin Ohlinger, Archie’s care manager, had told us earlier that day that Dr. Hlavacek had taken a shining to the little man. The doctors had propped Archie up in his bed so that he was sitting like an old man with poor posture. The baby was looking all around, his eyes groggy after days of sedation. “Hi, Archie!” I cooed. “Look at you without tape all over your face and no tubes in your mouth!”

John and I had only two or three minutes with Archie until we had to leave the unit. “We just wanted you to see him without his ventilator,” his nurse explained. As John and I left the PCICU, a baby, fresh from surgery, was coming down the hall. Six people wearing surgical scrubs were pushing the baby’s bed as the surgeon, Dr. Bradley, followed a step or two behind. I’ll never forget how confident Dr. Bradley looked. He held his shoulders back so that his chest was thrust forward. His chin high in the air, Dr. Bradley was cock of the walk. As we turned the corner, the baby and surgical team disappeared inside the unit, the doors mechanically shutting behind them.

Early the next morning we received a call from the hospital that Archie had been re-intubated. His left lung had “whited out,” or collapsed. During rounds Friday morning, Dr. McQuinn told us that he had been encouraged by the first few hours of Archie’s extubation. Encouraged enough to try again, in fact. He explained that Archie’s lung collapse wasn’t necessarily a result of congestive heart failure. “If he fails the second attempt at extubation, we’ll begin to look very seriously at setting a surgery date,” he told us. Dr. McQuinn began walking away from the bed and then stopped, turning back to us. His hands clasped behind his back, he looked from John to me, then back to John again. “I do have to say that without the tape he does favor you, Dad,” he said and then smiled.

“But he has my spirit,” I added.

“He’s spunky,” Dr. Hlavacek agreed. We all smiled, the doctors, nurses, John and I.

The second attempt at extubation occurred Saturday evening. We sat with the little man all evening, watching his monitors, encouraged by his respiratory and blood oxygenation rates. A television flickered in the corner of the unit. Together the three of us watched “It’s a Wonderful Life.”

We called the hospital around 4 a.m. to check on Archie’s progress. We found out then that he had been re-intubated. His nurse explained to us that the baby had grown very tired and begun to struggle uncomfortably. Later that morning Archie’s doctor explained to us that he didn’t suspect the heart defect alone was causing Archie to fail the extubations. Because the doctor feels as if there’s something else there, he ordered several cultures taken to rule out pneumonia and other infections and conditions. We talked about the possible causes of Archie’s difficulty breathing without the machine’s assistance. The doctor prescribed prophylactic antibiotics.

On Sunday night, John and I spoke with Dr. Hlavacek. “So what’s our game plan?” John asked.

“He failed two attempts at extubation. We can’t do that anymore,” the doctor offered. “You know we have the tentative surgery date set. It looks like we’re headed in that direction even though we aren’t fully convinced that the heart failure alone is causing all of this. It could be, though, that all of the many small things he has going on are adding up to give him so much difficulty. We can fix the heart and see where that leaves us. We’re going to spend this week crossing our t’s and dotting our i’s. We’re going to call Dr. Weinstein at Harvard to determine if the leukemia will complicate the surgery. If Dr. Bradley approves, we’ll operate.”

As much as I hate the thought of sending my baby boy to the operating room, I look at the little man laid out in a stainless-steel crib, completely snowed by sedatives, hooked up as he is to so many machines, an arterial line in his groin, a PICC line in his right hand, an i.v. stuck in his left foot through which he’s received two blood transfusions, a catheter attached to a urine collection bag at the foot of his crib, and I think to myself that if surgery can help Archie shed some of this equipment, then I’m for it. Maybe afterward I’ll be permitted to hold my firstborn again.

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