Carter H. S.’s Story

Site created on February 1, 2012

Welcome to our CaringBridge website. We've created it to keep friends and family updated about little Carter. Get started by reading the introduction to our website, "My Story."

Visit often!! Read the latest journal entries, visit the photo gallery, and walk with us  - it's a marathon and we are beside Carter every step of the way.  Please write us a note... or many notes in our guestbook.

Please keep our family, especially our children, Carter and Clayton in your thoughts and prayers. Your love and prayers are felt through the miles and are greatly appreciated.  No amount of distance can separate your heart from ours.... 

Carter Harris Spielman Boughton entered this world on January 28 at 10:52 a.m. Carter was born 7# 4 oz. and 20 inches.  Shortly after birth Carter's first miracle became known.  While delivering the placenta, the doctor realized that the umbilical cord, which is usually attached directly to the placenta was attached to a water sack along side the placenta. This water sack was attached by blood vessels that generally would rupture during birth, making a successful delivery near impossible.  Our Doctor had only seen this one other time in his career.  These blood vessels did not rupture during birth and Carter came through with flying colors.  Due to this complication, however, Mom began losing quite a bit of blood and thanks to our Doctor, a wonderful nursing staff and a blood transfusion, made a quick recovery.    
    We were able to spend the next days with our precious new son at the Monroe Clinic, preparing for the days ahead at home in Galena.  By all accounts he looked very healthy, was nursing like a pro, and vitals were all checking out. We are grateful looking back on these peaceful first moments together.
    Carter is a beautiful boy with the soft features of his big brother. Carter is the dark and handsome younger brother of Clayton Richard and Madisyn. He has dark hair and deep charcoal eyes.    
    Little brother was able to spend a few precious moments with Clayton the day before we were to leave the hospital.  Clayton was a very proud big brother - was quick with hugs and an offering of M&M's.  Carter received a very sweet eskimo kiss before big brother left.  Carter has yet to meet Madisyn due to the hectic events that occurred before we were set to leave for home from Monroe Clinic.  
    As we were packed to leave - Dr. Kamil Sayegh, the pediatrician tasked with Carter's discharge with a clean bill of health, noticed a heart murmur that concerned him.  Upon ordering a precautionary eco cardio gram he decided that Carter had Truncus Arteriousus, a serious heart condition that needed immediate attention. That was Miracle number two.  Every Doctor we have seen since has commented on the fine work of Dr. Sayegh.  Our return home was now delayed.  The Cheta unit from UW Madison was rushed down to transport Carter to the Children's Pediatric Cardiac ICU.  We are grateful to Dr. Sayegh, without his expertise this would already be a different story. 
    After much testing the Dr.'s and surgeons in Madison were able to decipher Carter's condition.  In a very compassionate and honest meeting between doctors and family it was suggested that to receive the absolute best care available Carter needed to go to the Children's Hospital of Wisconsin (CHOW) located in Milwaukee. Overnight we received news that CHOW would accept Carter as a patient and the Cheta unit transported Carter to Milwaukee at 8 a.m.  
    Arriving in Milwaukee, we realized that we were in the only available room out of 24 rooms.  Miracle number three.  We have been treated with compassion and respect by a wonderful staff at the Children's Hospital.  Various sources have assured us that Carter is in The Best of hands. This Cardiac Intensive Care Unit, it's surgeons, and staff, are known throughout the country as the best of the best.  They are the right people to observe, diagnose, and prepare Carter for the marathon ahead.  They also will be with him throughout his long recovery after surgery.
    Carter's official diagnose is Truncus arteriosus, Interrupted Aortic Arch, and a Truncal Valve Insufficiency.  Highly skilled hands can repair all of these conditions, and will attempt to do so in a one day surgery.  Collectively all of these issues make for an uphill battle for our little warrior.  

   There is great hope, and great faith which is lighting our way.  Carter is surrounded by a VERY loving and supportive family...there are no words to adequately express this enough.  We are grateful for the outpouring of love from friends and family.  Please keep sending your prayers upward towards the heavens... this is a very overwhelming trial in our lives, and are dealing with it one moment at a time.  We are committed to helping Carter through this marathon one day at a time... and we Believe in our little Miracle.

Newest Update

Journal entry by Catherine Spielman

Carter has made positive progress everyday!!
There are a number of things we are keeping an eye on...
  • Main Bandage sites - both healing and Carter is more comfortable daily.  Walking feels good. 
  • Eye - the eye pain and sensitivity that Carter woke up with has improved daily as well - Thank Goodness!!  Part of the prep they did after he was asleep and before starting the procedure was to put gel drops in his eyes, cover eyes with cloth and then tape over top.  At some point Carter either opened his eye and irritated it or something fell in and scratched it.  His eye muscles were also the last muscles to ‘return’ making opening and focusing them really hard to do.  He was so proud he could open them both the morning after the procedure, even though it was painful to do so.  The right eye took a couple days after coming home to heal up.  
  • ‘Poke’ sites - IV locations as well as the vaccination site in his arm have all healed and Carter’s arm had improved quite a lot by the 3rd day home. 
  • Throat - intubation irritation.  Little by little this improved and yesterday Carter said it was almost completely gone.  Great news!  He handled intubation (a breathing tube) really well his first and second surgery.  His upper airway reacted though after the third one (at 4 months old) - that one took a lot longer to get over.  This one took a little while but we are so glad it kept healing day by day.
  • Infection - any infection stemming from the procedure would generally show up within the first few weeks.  Carter was warm - not feverish - but definitely warm those first days home.  They think this is a natural whole body inflammatory response to everything that happened.  At this time the ‘warmth’ comes in waves.  He has not had a fever, so good news!  We will continue to watch for signs of infection as the days progress, can’t wait to be ‘out of the woods’.
  • Chest - heart and breathing.  Carter has zero complaints about his chest area.  Deep breathing irritated his his upper airway at first but that is from the breathing tube.  
  • His Heart:  it’s sound has changed a little bit.  The ‘Trill’ is now gone and it’s back to just the ‘Tick’ or ‘Click’ that is the mechanical valve.  The trill had gotten louder and louder as the conduit became narrower and wow, had that changed.  It feels like we are listening to a miracle every night when we sneak in to check on him while he’s sleeping.  He has a sound unique to him - it’s a beautiful sound. 
  • Breathing:  it’s sound has also changed.  His breathing while sleeping is deeper - not quick, not slow, seems comfortable, but definitely not as shallow as it was before.  
  • Follow up:  Carter follows up with an echocardiogram on Wednesday as well as a lab draw and a finger poke.  We will compare the lab INR (tests coagulation levels in his blood) with his home finger prick machine to verify accuracy.  
  • Coronavirus:  Once home after his follow up we can truly start the two week clock and hope we successfully navigated going in and out of hospital and Madison without picking anything up. That will feel good to be past that window of time.  So far so good.  Then, we continue on as we were just prior to procedure.  Safer at home and limiting public outings and interactions.  We will remain ‘virtual’ for now. 
  • The timeline for our family ‘reopening’ will look very different from states’ plans.  For us, this will take awhile and that’s OK.  Looking forward, we will continue safe at home practices until our doctors tell us there are viable treatment options available in the event Carter or any of us come down with it.   We are Not holed up in fear - we are doing what is best for our family.  As a world, we are in the early stages of figuring this virus out and ways to medically combat it.  There is zero reason to put Carter or any of us at risk - we have risk factors outside of his in our family.  We can be patient.  We can wait.  Please be patient with us. This too shall pass. 
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