Nathan Blakeney, EKG Pro, at Children's Hospital in New Orleans.

Last week, Bryan and I took Nathan to Children’s Hospital in New Orleans for his annual checkup.  His heart surgery to correct Partial Anomalous Pulmonary Venous Return, a problem connected to his Scimitar Syndrome, occurred about three years ago.  The first year after surgery, appointments were a few months apart, but he has done well, so he is seen once a year now.

I asked the nurse who hooked him up for the EKG (electrocardiogram) if his scimitar syndrome required a different placement of the leads.  She told me the leads are, indeed, placed differently on patients with dextrocardia.  To get a proper reading on a heart that is positioned on the wrong side, it appears that the leads are reversed.

Typical placement of EKG leads

I snapped a picture of Nathan while the nurse performed his EKG.  He has had several of these over the years, and although he was not crazy about being wired up as a baby, he now takes it in stride.  He  giggled  when Bryan told him to be glad he doesn’t have a hairy chest.

"I think I'm starting to look like Sparky..."

The Sunday before Nathan’s back surgery (to correct Congenital Kyphosis), I knew his last fun event would be the Awana Club meeting held that night at our church, Grace Memorial.  By the week’s end, he would be recovering in a body cast, a fact that had Bryan, me, and other family members sad and worried.  The year before, we had made it through surgery to correct a congenital heart defect known as Partial Anomalous Pulmonary Venous Return, a complication of Scimitar Syndrome.  We felt like:  “Oh, no, here we go again.”

The previous Sunday, Nathan had won the coveted “Sparky Award,” meaning he had earned the honor of spending the week with the stuffed firefly toy that served as the club mascot.  He would be returning Sparky and leaving the next morning for Children’s Hospital in New Orleans.  Before the meeting, Nathan and I sat down at my computer and concocted a letter to let his friends know he would not be coming to meetings for a while.  I don’t know if I’m right about this or not, but I have always suspected that God is particularly moved by the prayers of children.  In a way, this was probably my sneaky way of soliciting sweet petitions from His favorite little folks…

As we created the letter, I remembered a picture I had taken of one of Nathan’s amusing antics.  He had the wild idea to cover his face with Sparky stickers one day and, after recovering from the initial shock of his unexpected appearance, I snapped the above photo.  So we left this letter and the funny (maybe a little creepy?) picture with Awana Director Jamie Carver before we left the club meeting that night.

Nathan mugging with Awana leader, Larry Burns

To be truthful, my own ability to pray had become “crippled” so to speak, so I am grateful that the children and my church family picked up my slack.  The letter was shared with club members and the kids sent Nathan adorable handmade cards as he recovered.  I am told that they did, indeed, pray for him.

What a thrill it was to return to Awanas the following month!  He was not able to participate in the signature Awana running games, but our youth minister, Evan Dickson, cleverly had Nathan “calling the shots” during the games, allowing him to feel “in charge.”

As the months went by, he soon transitioned into a custom-made body brace, and little by little, regained his ability to run and play.  The body brace is gone… now it’s all just a terrible, and in some ways, wonderful, memory.

Related post:  The Principle of Finders Keepers

Please remember Rylie, my 2 year old neighbor in Picayune.   She is in Children’s Hospital in New Orleans.  She has been having continued high fevers over the past several months, infections, and then everything will be back to normal for a while.  Please pray that the doctors will be able to discover the source of the infections and fevers and that the Lord will lay his healing hand upon her.  [Submitted April 18, 2009]

Please remember this new mother (Carrie) and her 2 month old daughter (Savannah).  Carrie developed congestive heart problems after Savannah’s birth and is still having problems, but is doing better.  Savannah has “caught” a sore throat this week, apparently from Mom & Dad, so remember her and Mom & Dad, too!  Carrie’s been going to Jackson during the week for therapy, but hopefully will be able to remain at home soon.  [Submitted April 18, 2009]

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.”

Nathan next to the marble run at Children's Hospital, finally heading home after spinal fusion surgery.

It was 3:00am, and I was in a spiritual crisis.  Tears were trailing down Nathan’s temples as he lay in a hospital bed at Children’s Hospital in New Orleans; he was fighting pain and trying to get used to his new body cast.  It had only been a year since his open heart surgery in Michigan.  Now I was watching him struggle to recover from spinal fusion surgery.  Doubt was creeping in–I was wondering how God could let this happen again, and I felt helpless and abandoned.

While I was dabbing his tears with a wadded piece of tissue, Nathan looked at me and quietly said, “Mom, I remember the principle of finders keepers.”

“Finders keepers?” I repeated with confusion.  Maybe he was delirious–talking nonsense, I thought.

Then Nathan said something I will never forget:  “God says, ‘I will never leave you; I will never forsake you.’  When you find God, you get to keep Him.”

I was too stunned to respond.  Such faith coming from a six-year-old.  He stared at me for a moment, then closed his eyes, leaving the skin at his brows to soften and settle.  Seems he had finally succumbed to his pain medication and had mercifully drifted off to sleep.  I don’t think any pastor has preached a sermon that bowled me over as much as Nathan did that night.

[Many thanks to Mrs. Kay VanderLey.  I learned weeks later that she taught Nathan the "principle of finders keepers" during Sunday School at Grace Memorial Baptist Church.]

Here are a few special stories about Nathan:  Nathan’s Prayer, Before the Back Surgery, and Reminiscing:  Nathan Buys the Shark Professional Cordless Sweeper.

Lake Pontchartrain Causeway

For as long as I can remember, I have been mildly gephyrophobic, i.e., bridge phobic.  As a kid, I particularly dreaded going over the Pontchartrain Causeway, the longest bridge in the world until Thailand’s Bang Na Expressway was completed in 2000.  The fear subsided over the years, but reared its ugly head again in the aftermath of Hurricane Katrina when we had to make trips with Nathan to Children’s Hospital in New Orleans.  The Causeway had sustained damage and looked like it was temporarily pieced together from a giant Erector set.  That and the signs urging travelers to drive slowly and make no lane changes for safety reasons reignited my little phobia.

I am watching breaking local news that Popp’s Ferry Bridge in Biloxi has been hit by a barge.  A section of the bridge is now missing, and apparently only the bridge tender’s unoccupied car plunged in.  The bridge tender was stranded initially, but Mayor A.J. Holloway just reported that she has been rescued and is considerably “shook up.”  Let me tell ya’–I’m shook up for her!