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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

 

Patient & Family Satisfaction Improvement Survey
by Anne Moore
01/18/2004

When Archie was discharged from MUSC, we were asked to complete the MUSC Patient & Family Satisfaction Improvement Survey. Anne returned the accompanying letter with our completed survey.


Dear Children's Hospital Director:

I wanted to return my completed "Patient & Family Satisfaction Improvement Survey" with an accompanying letter of heartfelt thanks. My infant son, John Archer Moore, or Archie, was admitted to the PCICU on
December 6, 2003, with a diagnosis of congestive heart failure as a result of a congenital heart defect. Our six-week-old son's condition was critical and surgical repair was eminent. Your fine staff's knowledge and skill carried Archie through the pre-operative and post-operative care periods, as well as the surgical repair itself. My husband and I are eternally grateful for the gifts your staff gave to us: a new appreciation of the human conditions of kindness and compassion; and, ultimately, the promise of a future with our son.

Please pass my husband's and my acknowledgement onto your following doctors: Dr. Andy Atz for advising Dr. Ben Horne to transfer our son to MUSC before his condition grew too grave, for his friendship during Archie's hospitalization, for having the compassion to share our heartache and fear during on the surgery day when Archie's outcome appeared grim, and for becoming the doctor who discharged our son, allowing us to take our baby home for the first time; Dr. Tim McQuinn for always taking the time to explain Archie's condition to us during rounds, for protecting our son from the hematologists, and for cheering on the little man during his first attempt at extubation; Dr. Jon Lucas for watching over Archie during his second attempt at extubation, and for caring enough to call my husband and I in the middle of the night to inform us regarding the outcome; Dr. Sarah Taylor for her willingness to discuss our son's health issues with us at length, and for sharing with us stories of her own son, Jefferson, reminding us of the normal childhood ahead of Archie pending a successful surgical repair; Dr. Scott Maurer and Dr. Cynthia Rackley for encouraging us when Archie's daily food intake diminished for a day or two; and Dr. Eric Graham for spending time with us in the days following our son's surgery, explaining the many things going on inside the little man's body.

Although each and every one of our son's nurses and respiratory therapists are expertly skilled and infinitely caring, my husband and I wanted to mention the following individuals: Brent for helping us remain optimistic the morning of Archie's surgery; Kim for admitting our son post-operatively as well as for caring for our baby during his most critical period, and for explaining the reasons for the many tubes and wires attached to our son and then delicately covering his little body with a receiving blanket after she'd finished her explanation so that my husband and I could focus on Archie's beautiful face; Amanda for providing straightforward answers to our many questions, and for calling the unit the day of Archie's surgery to check on his condition; Sonya and Stacie for taking a special interest in our son's wellbeing; Sarah for giving my husband and I the gift of holding our son for the first time post-operatively on Christmas Day; Tonya, who cared for Archie on his first evening after surgery, for taking the time to explain to my husband and me the pacing rhythms of our son's heart, and for sharing in our elation when Archie drank his first bottle a few days later; Ruby, Barb, John and JeanMarie for ensuring the little man's lungs worked as optimally as they were able; Dan and Kay for caring for Archie his first and last weekend in the unit; Michele for flagging the little man's rash; Kelly for keeping us laughing; Christine for the coffee and conversation; and Tasha, Leslie, Melissa, Amy, Janna, Tamara and Ms. Mary for helping my husband and I learn how to parent a child with special needs. (Please know that any omissions were not intentional. My husband and I appreciated everything everyone did for Archie and us.) I also wanted to acknowledge the quality care both Archie and we, his parents, received from Robin Ohlinger, our care manager. Throughout Archie's hospitalization, Robin was always available to answer our questions and listen to our concerns. She endured the drama of our son's surgery with us as if she were a member of our own family. We will always remember her care and compassion on that most trying of days. Robin also offered us advice and suggestions on parenting our son that we will always appreciate.

My husband and I had heard wonderful things about Dr. Scott Bradley's surgical skills from the parents of children he previously treated before we arrived at MUSC, as well as from the doctors at Greenville Memorial Hospital. Knowing that Dr. Bradley was the surgeon operating on our son gave us the confidence and courage we needed to walk our only child down the long hallway toward the operating room. I don't know what words to use to describe the reverence I have for the man who saved my baby's life, but I do know that I will never forget the way Dr. Bradley smiled at my husband and me when he spoke with us after Archie's surgery. He looked so pleased with himself, so relieved. His surgical cap had left a mark across his forehead, a physical indication of the tedious hours he had spent working on our son's tiny heart. I will forever be grateful to Dr. Bradley for bringing my baby back alive from the operating room.

Most of all I'd like to commend Dr. Tony Hlavacek whom will always hold a very special place in my heart. Dr. Hlavacek, the first doctor I met the day Archie was transferred to MUSC, asked me if I had ever taken my baby home from the hospital. When I told him that I hadn't, he promised to do everything he could to give me that opportunity. He kept his promise. My husband and I will always be thankful for the care and concern Dr. Hlavacek showed both our son and us. We are eternally grateful for his diligence in treating Archie, as well as for his friendship during Archie's hospitalization. You are fortunate to have such a kind and knowledgeable doctor on your staff.

When we were planning our family, my husband and I never imagined the birth of our first child would initiate such an extraordinary string of events. I imagine that six months from now my husband and I will wonder how we ever had the fortitude to endure the first 72-days of our son's life. I am sure, though, that we will never forget the manner in which your outstanding staff facilitated our child's healing process, and cared for us, his parents, at the same time.

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