Right to Left: Karen Blakeney, Sandy Adams, Grace Booth, and Sandy Lemoine; Southern Christian Writers Conference

This past weekend, I traveled to Tuscaloosa, Alabama, for the 20th Annual Southern Christian Writers Conference.  I attended several nice workshops and met some wonderful folks.  It was truly a blessing.

I decided to enter my Parents magazine article, “Nathan’s Wonder Slide,” in the conference writing contest.  On Saturday, I learned my entry won first place in the magazine category.  Coincidentally, I made friends with a few of the other winners and happened to be sitting with them when the awards were announced.

Tuscaloosa is still recovering from the deadly tornado that struck on April 27th.  Coming from South Mississippi, it’s easy to sympathize; we have experienced Hurricane Camille and Katrina.  It was heartwarming to see volunteer organizations in town, including the two large Samaritan’s Purse trucks teeming with workers at our host church, First Baptist of Tuscaloosa.   It would have been understandable if First Baptist had bowed out as host of the writers conference this year given all the work they are doing to help in their city’s restoration, but they took on both projects.

It was a great conference; I hope to return next year.

In my defense, I wanted a copy for each of my five kids, a copy to frame, and copies to give friends.

The article explains an out-of-character purchase my husband made to create a fun summer for our son before he faced spinal fusion surgery.  Here is the cover of the issue that “Nathan’s Wonder Slide” appears in, along with a clip of the article.

Click here to read the article online.

Nathan Blakeney poses in front of his Banzai Sidewinder Blast.

Yesterday, I was in Tuscaloosa for the Southern Christian Writers Conference. While I was listening to one of the writing seminars, my cell phone vibrated.  I could see my husband was calling.  “How sweet,” I thought.  “He’s calling to wish me a Happy Anniversary.”

I quietly answered.  “Guess what,” he says.  “We just got Parents magazine in the mail.”  I was a little excited because the July issue has an article I wrote about Nathan.  “Oh, and Happy Anniversary…”

It was, indeed, a Happy Anniversary.  I hope you’ll take a look at “Nathan’s Wonder Slide.”  If I’ve bought all the issues in town , you can read it at Parents’ online magazine:  http://www.parents.com/kids/development/physical/nathans-wonder-slide-/

Many thanks to local photographer, Lisa Tilley-Newman, for the beautiful photos in the article.

1. Normally, the right pulmonary vein enters the left atrium here. 2. In PAPVR, the right pulmonary vein abnormally enters the right atrium.

This is one of the best illustrations I have found for explaining PAPVR.

Partial Anomalous Pulmonary Venous Return (PAPVR) is a rare congenital heart defect in which blood flow from one or more of the pulmonary veins return to the right atrium instead of to the left atrium.  This is a problem because the right atrium shoots this already oxygenated blood right back to the lungs to be oxygenated again.

Of course, this is a very inefficient way for the heart to function. The heart must work extra hard to provide an adequate amount of oxygenated blood to the body; and over time, this causes a variety of consequences, including arrhythmias, pulmonary hypertension, and right-sided heart failure.

If 50% or more of the pulmonary veins anomalously return, this is considered clinically significant enough to warrant surgical correction. If the patient has an Atrial Septal Defect, the surgeon will close the defect with a patch and redirect blood from the anomalous pulmonary vein to the left atrium.  If there is no ASD, a baffle or tunnel will be created to redirect blood to the left atrium.

PAPVR associated with Scimitar Syndrome has the added complication of dextrocardia. The surgery will likely be performed on a heart that is rotated backwards.  The atrial septum is usually intact.

Our first look at Nathan after heart surgery

My own son, Nathan, had this surgery on July 25, 2006, at C.S. Mott Children’s Hospital at the University of Michigan Medical Center. Our experience included a full day of preliminary testing, surgery the following morning, and a stay in PICU.  After extubation, he was moved to a regular hospital room where he spent the first few days on strong pain medication.  Removal of the chest tubes occurred on about the third day–this was somewhat emotionally challenging but was successful, nonetheless.  By that evening, his personality began to return.  On the fourth day, nurses encouraged him to take a brief walk down the hall.  By the fifth day, he was well enough to be released!

Nathan takes his first walk down the hall after heart surgery to correct PAPVR, Scimitar Syndrome. His surgery was performed at C.S. Mott Children's Hospital, an excellent facility for the treatment of congenital heart defects.

We used a number of child-friendly books to prepare Nathan for surgery.  One of his favorites was Franklin Goes to the Hospital.

Other related posts on this website include:  Scimitar Syndrome, Dextrocardia, Nathan’s Prayer, Remembering C.S. Mott, and Dr. Edward Bove.

Also see my article in Parents magazine:  “Nathan’s Wonder Slide”

If your child has an upcoming heart surgery, consider adding him/her to our Prayer List.

Happy Day! Nathan is about to have his body cast removed at Children's Hospital in New Orleans

When Nathan was born, we soon discovered that he had Scimitar Syndrome and would need open heart surgery to correct Partial Anomalous Pulmonary Venous Return. It was a frightening time in our lives.  Bryan and I were tremendously relieved when surgery in Michigan proved to be successful.  End of story?  I wish.

About three months later, a checkup revealed that a congenital heart defect was not his only problem. Nathan had a back defect that would paralyze him if left untreated.

After spinal fusion surgery to correct congenital kyphosis, Nathan spent several months in a body cast that started just under the armpits and ended about mid-hip. In the summer of 2007, I searched around the internet to see if a parent had posted their experiences with helping a child under these circumstances, but there was not much to be found on the subject.  Perhaps, writing about our experience will be helpful to another family.

One of the first tricks we learned was how to “petal a cast.” The edges of a fiberglass cast can be rough and uncomfortable, so we were given a roll of “Hy-tape,” a peach-colored adhesive tape, to line the exposed edges of the cast.  This tape is latex-free and has a zinc oxide formula that is supposed to be “soothing to delicate skin.”  Using short three to four inch strips, we worked our way around the top edges, the bottom edges, and the circular cut-out area that allowed his diaphram/abdominal area breathing room.

During his first body cast check-up, it was noted that the cast was slightly high under one of his armpits, so we were sent to the cast technicians to cut away a small section. After the adjustment, the technician gave us a different adhesive tape to re-peddle the cast under his armpits.  Nathan liked this tape much better.  Instead of a rubbery feel, this soft brown tape had a suede-like texture that was more comfortable against the skin.  The name of this tape escapes me (anyone out there know?)*, but if given Hy-tape, you might want to inquire about the tape I’ve described.

Although I heard Nathan’s cast referred to as a “spica cast” by a young resident at the hospital, I believe a true spica cast immobilizes the hips and thighs.  At a certain point in Nathan’s recovery, he was able to walk as his cast stopped short of his legs.  It is still important to escort a small child when using steps, chairs, and bathroom facilities, because the rigid cast can cause problems with balance.

Fiberglass casting material is waterproof, but the lining is a combination of cotton batting and cotton gauze.  You do not want this to get wet!

Bath time needs to be well-planned.  This is what worked well for us:

It's important to prepare for bath time when your child is in a body cast.

1. Lay a large waterproof pad on a bed.  Top it with a bath or beach towel.
2. To the side of this, have your bath supplies ready–washcloth(s), a towel for the body, a hand towel for hair, liquid bath soap, a plastic basin for warm soapy water, a second basin for clear water, “No Rinse” Shampoo.
3. Place child on the towel and clean one quadrant at a time (wash cloth with soapy water, then clear water), using care not to get the inside of the cast wet.  Dry thoroughly between quadrants to keep child from getting cold.  In cooler temperatures, you may want to place the towel in the dryer a couple minutes for added warmth.
4. Keep child warm with a towel or blanket while washing hair.  With “No Rinse” Shampoo (drug store should carry this), you can lather up the child’s hair, and then use a hand towel to fluff hair until dry–no water necessary.  I like this better than trying to shampoo and dangle a child’s head under water to rinse.

Another challenge we faced was the “itchies.” We found that we were able to use chopsticks to carefully reach a few miserable places  inside the body cast.  Depending on your child’s age, it is probably a good idea to supervise playing with small toys such as legos.  Small items could get lodged in the cast and cause skin irritation.

This is no picnic, but… if you can keep your child entertained with books, movies, toys, games, and upbeat conversations, this, too, shall pass!

Related posts:  The Principle of Finders Keepers, Before the Back Surgery.

Also see my article in Parents magazine:  “Nathan’s Wonder Slide”

*April 29,2009 Update:  “Moleskin tape.”

My son, Nathan, now eight-years-old, has Scimitar Syndrome. His surgery, performed almost three years ago, was successful.

The abnormal pulmonary vein may be connected to the inferior vena cava or directly to the right atrium, sending already oxygen-rich blood into the chamber that sends blood to the lungs.  Because this is an inefficient way for the heart to work, the heart can become enlarged and weakened.  Untreated, this CHD can lead to dyspnea (breathlessness), atrial arrhythmias, pulmonary hypertension, and heart failure.

Other components of scimitar syndrome include dextrocardia and hypoplasia.  Dextrocardia, the severe rotation of the heart onto the right side of the chest or the mirror-image presentation of the heart, requires no surgical intervention.  Hypoplasia, however, can be associated with recurrent bouts of pneumonia, and in some cases, pneumonectomy or removal of the hypoplastic lung is necessary.

For some patients, conservative treatment is an option.  But if more than half of the pulmonary veins empty into the right atrium, it may be necessary to reroute blood flow into the left atrium.  This is achieved by surgically constructing a “baffle” or tunnel out of the patient’s own pericardium, creating a pathway through the right chamber and into the left.

A different approach may be warranted for patients with a large systemic collateral artery.  Coil occlusion, the placement of a coil to block blood flow, can improve symptoms of heart failure in infants with scimitar syndrome and can be a good surgical correction for this condition.

On a personal note, Scimitar Syndrome is the heart condition that my own child has battled.   See these related articles on this website:  Dr. Edward Bove, Nathan’s Prayer,  About, Partial Anomalous Pulmonary Venous Return, A Memory of Scimitar Syndrome, Three Year Anniversary.

Also see my article in Parents magazine:  “Nathan’s Wonder Slide”

Does your child have Scimitar Syndrome?  Is he/she facing surgery?  Consider adding your child to our prayer list.