Welcome to Cole's Web Page!
This page was created to keep all of Cole's family and friends updated on his progress!
Cole was diagnosed with a Congenital Heart Defect (CHD) on Thursday, October 17, 2002, when he was 8 weeks old. His CHD is called Truncus Arteriosus. Truncus Arteriosus is as it sounds. Instead of having a pulmonary artery connecting Cole’s pulmonary branches to his right ventricle and having a separate aorta from his left ventricle, Cole just had one, a trunk. This trunk was trying to be both Cole’s aorta and his pulmonary artery. It was connected to both of his ventricles by a hole or Ventricular Septal Defect (VSD) in the wall between the two chambers that allowed the blood to leave his heart. Cole’s official diagnosis was Truncus Arteriosus Type 1 with a Ventricular Septal Defect and a Right Aortic Arch. There are not any known reasons as to why Cole’s heart grew this way, it just did. Cole underwent open-heart surgery on November 13, 2002 at Children’s Hospital in Omaha. His surgeon, Dr. Duncan and all of the amazing staff at Children’s gave Cole the ability to live his life that day and our gratitude will forever be with them.
Cole’s heart check-up on August 12, 2003 showed that the conduit that serves as his pulmonary artery had restricted. This restriction created a very narrow passageway for his blood to get to his lungs. It also put a strain on his right ventricle to push the blood through the restricted passageway. Cole underwent a conduit replacement surgery on October 28, 2003. Instead of using a homograft this time, Dr. Duncan used a 18mm Dacron conduit with a pig valve. Cole came through this surgery fabulously and was released from the hospital just 4 days later! Both of Cole's post-op checks resulted in gleaming reports. Only time will tell how his body reacts to this conduit. We do know that it will be replaced again at some point. Ideally, his new conduit will not need to be replaced until his teenage years. Shawn and I will settle for it working until he is old enough to understand what is going on and why. Whatever may come we will face and conquer it as we have since the beginning...as a family.
Tuesday, March 28, 2006 10:30 PM CST
Wow, where to start do I start? Well, grab a cup of coffee, a soda or a drink, settle in and get comfortable. I haven’t updated in many, many months so it is going to be a long one!
Let’s start with the good stuff…the most important stuff: Cole, the little boy.
Cole has changed so much since we left Kansas. The only evidence of my “baby” I get to see is on the rare, dwindling occurrences when I get the request to “rock”. For a brief moment during those times, if I close my eyes, the warmth of his little hand and the weight of body curled up against my arm will let me remember that once upon time not so long ago, he was my little, tiny baby. Of course, my trip down memory lane often comes to an abrupt end as I feel the little arm of “my baby” wriggle away and shortly thereafter hear his voice triumphantly declare: “Mom, boogey – I got it!” Ahhhh, the priceless treasures of motherhood!
Up until the past year, we often referred to the attributes of Cole’s behavior as parts of his personality. We knew that he was a bit timid and far from aggressive. We knew without a doubt that he was brave and quite determined to master any challenges he encountered. After seeing so much more of “Cole” in the past nine months, I think it is more appropriate to say that those attributes are part of Cole’s temperament. His personality has shown us that he is a deep thinker, a silly comic, creative soul and so very kind hearted. It has been so rewarding to watch it all emerge and we can easily say that Cole adds great color and energy to our home.
We attribute a lot of Cole’s progress to going to “big” school. Where to send him was definitely a decision we put a lot of time into and can confidently say we made the right decision for him. The Montessori Method compliments Cole’s personality and it shows. He loves his teachers and his friends and is anxious to go each day. He writes his name pretty well and has become proficient at counting to 20 and to 10 in Spanish. He mastered the seven continents and is now working on the countries along with the beginning steps to reading. Now before this update begins to sound like a bad holiday brag letter, his accomplishments are the normal progression of the Montessori curriculum. To us, it is all a great sign that, in more ways than one, Cole is doing great at just being Cole, the little boy.
Now on to the medical stuff…….the good, the bad and the ugly.
As most may know, Cole’s heart check in the beginning of December had great results. His conduit is proving to be a good one and could last him for another 5 years. He handled his appointment, echo and X-ray with little to no tears which is a stark comparison to the year before. His heart is doing great and we received a “good to go” until next year. So that sums up his heart……kind of.
Cole has had this long-running affair with persistent congestion and frequent respiratory infections which all seem to favor his right lower lobe. After being able to rule out things such as Cystic Fibrosis, asthma and simply an overabundance of allergies, his pulmonologist scheduled a bronchoscopy. What they found is that Cole’s trachea and right bronchus are about 50 percent compressed or simply said – squished. (*See pictures 1 & 2 in photos*) The culprit behind his squishing was believed to be his right aortic arch and an MRI would provide a clear view and a definite answer.
The MRI was scheduled but Cole woke up with a 102.4 fever four hours before we were to report to the hospital. That MRI was scrubbed from the schedule and we made a trip to his pediatrician instead where we found out both of his ears were infected. We left armed with an antibiotic prescription and plans for a quiet, calm end to the last 3 days of 2005. 2006 slipped in while we slept and screamed with gusto a day later as Cole was admitted for a week long stay at Children’s hotel with pneumonia – again in the right lower lobe. He was a heck of a trooper and we got the MRI rescheduled for the next opening in February. So long story short – the MRI finally happened and the results confirmed the theory that his right aortic arch is behind the squishing. Being that it is a placement problem it all falls into the lap of Dr. Duncan, Cole’s heart surgeon.
We met with Dr. Duncan yesterday and we were able to discuss the what-to-dos, how about’s and what if’s. After explaining everything and answering our 492 questions, Dr. Duncan summed it up simply by saying that Cole needs to earn his surgery. The thing is that like most things in life, nothing can be guaranteed. We don’t know if the compression will advance or if Cole’s body will adjust. What we do know is that if Cole develops pneumonia again or starts to have trouble breathing or begins wheezing when he is actively playing, Dr. Duncan will need to give Cole’s aorta a bit more length so it has more room to arch out away from his trachea and right bronchus. So the next surgery Cole sees may to be replace the conduit he has because of his CHD, or it may be because his aorta needs to be made longer, or it may be if the “mild” leak in his aortic valve becomes a “moderate” leak. As always, we know that at best Cole will have one more open-heart surgery and only time will tell if he needs to have more than one. As with everything the only consistent answers can honestly be “it is possible, it may, it could, or it might”.
So until something changes, we are going to just go about living our blissfully simple, daily lives in a home filled with 101 to-do tasks, 2 over-demanding & somewhat dramatic dogs, an abundance of happiness and a lot of love. Those things among so many others render us grateful and blessed.
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507 North Taylor
Papillion, Nebraska 68046
http://www.heartcenteronline.com/myheartdr/common/articles.cfm?Artid=438&startpage=1 A great explanation of Truncus Arteriosus.
http://quiltsoflove.com/quilt_2005/cole_mk/cole-mk.html My very own Quilt of Love!