Nathan at Children's Hospital in New Orleans - pulmonary function tests.

Stressful, stressful, stressful.  That’s how I would describe these past few weeks.  I always dread Nathan’s annual checkup.

I know exactly why I have a hard time settling down.  Nathan’s heart surgery about five years ago was the most stressful event our family had ever faced.  When we got the news that the surgery was a success, we felt so joyful and relieved.  It felt like an enormous burden had been lifted.

As he was recovering at home, we decided we needed to have a pediatric orthopedist take another look at the little deformed vertebra he was born with.  We had been told to be on the lookout for scoliosis.  His back looked nice and straight, so we weren’t particularly worried about it.  But we wanted to play it safe–make absolutely certain that his back was A-okay.

So I set up an appointment about 3 months after that harrowing heart surgery.  I didn’t even bring Bryan for support.  I could handle this by myself because I was dang-near certain there was nothing wrong.  Heaven help me–I was so wrong.

A side view x-ray revealed that he had congenital kyphosis and needed spinal fusion surgery.  It was awful to hear that he was looking at another surgery, and it was going to involve a difficult recovery, a body cast, and a body brace.

Now, I can’t help but feel this sense of dread when I go to these checkups.  I always wonder:  Is someone going to surprise me with some more bad news?

Echocardiogram

We saw three different specialists this week.  First, we got some advice from a pulmonary doctor.  A component of Nathan’s scimitar syndrome is that he has a hypoplastic lung.  The top third of it functions, but the rest of it is practically useless.  We know he has allergies, but we have also suspected he has asthma.

After pulmonary function tests, it was determined that he did, indeed, have asthma.  He will need to use an inhaled steroid each day to improve the inflammation in the alveoli of his lungs.  This will prevent further damage and improve his lung function.  I am very, very glad we met with this doctor.

Next stop:  cardiology.  After an EKG and echocardiogram, the doctor informed us that the baffle created during Nathan’s 2006 heart surgery appeared to be functioning just fine.  Instead of coming every year, he suggested every two years (!) would be reasonable.  Felt so good to hear that.

Finally, we took x-rays to see how that spinal fusion was holding up.  This was the moment of truth.  Oh, oh, oh–I was so nervous.  Last year, we were told the fusion had solidified nicely, but it was starting to curve.  The curve was at 43 degrees.  If it reached 50 degrees, he would need another surgery.

Had the curve worsened?  Yes.  But…  It had only worsened by one degree.  And the doctor elaborated on what we were looking at if a growth spurt causes the curve to hit that dreaded 50 degrees.  Instead of the big deal surgery he had back in ’07, he would cut through a simple layer of skin directly to the spine and place a few bone grafts.  He would be released the next day–no body cast, no brace.  I could live with that.

All in all, a good day.

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.

This little news segment ran on our local station, WLOX, back in 2007.  Nathan was five years old and was just a few months recovered from heart surgery to correct PAPVR (Partial Anomalous Pulmonary Venous Return), a component of scimitar syndrome.  His sister, Michelle, presented him as her everyday hero at a school luncheon.  Nathan whispered to Bryan and me, “Are you so proud?“  Indeed, we were.  Of both the presenter and the receiver!

It was a bittersweet moment.  We had just learned he had congenital kyphosis and would require spinal fusion surgery to prevent paralysis.  That surgery was successfully performed a few months later.  But on that day, he was our inspiration–our hero!

Martha Teal's blog is called "Lookin' Up."

Last week, I posted “99 Balloons,” the touching video story of the life of Eliot Mooney. While visiting his parent’s website (Matt and Ginny Mooney), I noticed a poem by Martha Teal entitled “For Nathan.”  Having a Nathan* of my own, I was intrigued enough to read it.  I’m so glad I did…it was a beautiful tribute to baby Naomi, born the same day as her son, Nathan.  The story behind the poem is exceptional.  I wrote Martha and asked her for permission to publish it on Nathan’s Prayer.  Here’s what she said:

Marcia and I met at church and taught Sunday School together in the fall of 1989. We found out we were pregnant at the same time, went to the same doctor, and were due two days apart.  Neither of us was thrilled to be pregnant as we each had several children already at home, Marcia-three and myself-four.  Her ultrasounds showed some abnormalities, and although we never talked about it together, we both mentally prepared ourselves for her to bring home a baby with Downs even though that diagnosis was never given.

I delivered my son on June 19 at 12:30 am, fine and healthy,  He weighed just under 8 pounds.  Marcia and her husband stopped by to visit us the next morning when she came in for a stress test.  She was scheduled for a C-section the following day, but the stress test didn’t go well, and they decided to take the baby that day instead.  And so, after discovering our pregnancies at the same time, sharing visits to the doctor (we often made our appointments at the same time), and becoming good friends, we delivered on the same day. [Marcia's baby, Naomi, was born with Trisomy 18.]

I had a chance to visit Marcia while we were still in the same hospital (she was later transferred because of Naomi’s condition), but the nurses didn’t want me to take my baby into her room.  It was a sad and confusing day and in the confusion, I never asked to see her baby.  I’m not sure why God brought us through an experience like this together only to have Marcia’s baby live just two days, but I know He is an awesome God who makes no mistakes.  Something happened during that time that was bigger than any of us could understand…I know that.

And so, Eliot’s story touched my heart deeply.  What a blessing to meet that little one even if only through an internet video and blog.  Someday my Nathan and I will meet Naomi, too, and maybe someday we’ll find out the bigger work that God was doing.

You are welcome to use my poem and story.  I pray it blesses and encourages someone else out there.

In Jesus, Martha Teal

On her son’s first birthday, Martha wrote this poem and shared it with her friend, Marcia:

FOR NATHAN

There’s a little girl in heaven
Who is just about your size,
She plays peek-a-boo with Jesus
And watches angels fly.

And when she needs to have a hug,
She climbs on Jesus’ knee,
He wraps His arms around her
And loves her perfectly.

Sometimes he tells her stories
About her mom and dad,
And how much her family loves her,
I know that makes her glad.

Jesus cares for children,
So if she ever cries,
He takes her up into His arms
And gently dries her eyes.

I watch you growing bigger,
And as you learn to stand,
She learns to walk in heaven
By holding Jesus’ hand.

- by Martha Teal

I wrote Martha back:

Thank you so much for giving the green light for me to post your lovely poem and story.  I already see great meaning and purpose in your experience.  We have become such a throw away society that we fail to see the beauty in the short lives of the Eliots and Naomis of the world.  I love stories like this because they teach us to cherish the gifts that God gives us, especially the imperfect ones.

[Visit Martha Teal's blog at http://justseven.blogspot.com/]

*Nathan’s Prayer is named for my son who was born with Scimitar Syndrome.  In July of 2006, Dr. Edward Bove successfully performed heart surgery on Nathan.  Three months later, we discovered a back defect would require spinal fusion surgery to prevent paralysis.  It’s been a tough journey, but Nathan is doing great!

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.