Wednesday, February 26, 2014

The Next Step

We have received our appointment time for our follow-up at the surgery clinic.  Presumably, this is our appointment that will consist of the x-ray, CT, echocardiogram, etc. that will tell us the severity of CJ's condition.

Currently, we are scheduled for the end of April.  As I mentioned, CJ is hoping for an earlier surgery than we had discussed with the doctor, so I'm going to see if they can move this testing appointment up.

Thanks for your prayers!  We'll keep you updated.

Tuesday, February 4, 2014

And the journey begins...

CJ was born in January, 2001.  As he grew, we noticed a dent developing in his chest.  We mentioned it to his pediatrician, who said it was something we would keep an eye on. 

At another check-up a couple of years later, our doctor confirmed it was pectus excavatum (PE):  "a congenital malformation of the chest wall characterized by a funnel-shaped depression with its apex over the lower end of the sternum; it is caused by shortening of the central portion of the diaphragm, which pulls the sternum backward during inhalation, and by the growth of ribs. Except in mild cases, it decreases the ability of the child to engage in sustained exercise. It also delays recovery from coughs and colds, reduces the ability to eat a full meal (so that most patients are underweight), and often produces a functional heart murmur. Noisy breathing may occur during sleep. A child may develop an emotional problem because of embarrassment over the deformity. It can be satisfactorily corrected by surgery. Called also funnel breast or chest and koilosternia." (  Often, PE causes the heart to move to one side, lung development is hampered, and breathing problems can occur.

However, because most treatments don't occur until patients are at least 13-15, we knew it was just a waiting game.  The cartilage of the sternum is still fairly pliable and isn't hardened, so this is the age when it's easiest to correct. 

As CJ grew & developed, the dent in his chest also grew.  He became winded more easily that his peers.  He frequently complained of chest pains; not major or long-lasting enough to cause us to take him to the hospital, but enough to take note of.  He probably has pains 3-5 times a week for a few minutes.  (Because we had researched PE, we knew this was part of the condition.)  His posture grew wasn't the typical "just sit up straight" kind of lazy posture one often sees in kids; this was obviously more than that.  Another issue was self-esteem.  He had started becoming self-conscious about his chest.  Thankfully, around this time, he met a boy in our neighborhood who was born with a heart condition and had undergone several heart surgeries.  He had quite a scar on his chest, and CJ figured if his friend wasn't self-conscious about his chest, then he didn't need to be self-conscious, either!  His friend & the timing was a God-send!  I should also mention that, as is consistent in PE patients, CJ's weight percentile is low.  He's always been thin, and is currently in the 30th percentile for his age.

A couple of weeks ago, at CJ's annual check-up, our pediatrician decided it was time.  We went to Arkansas Children's Hospital for a consultation.  After measuring his chest, talking with CJ, and discussing concerns with us, the doctor agreed that CJ seems to be a candidate for correction. 

The procedure we plan to have done is called the "Nuss Procedure."  It is a procedure that basically puts a bar under the chest wall, and "flips" the sternum out.  The bars are secured at the sides of the ribcage and remain inside for 3 years.  During this time, the cartilage hardens, and the sternum is basically retrained to stay put in this corrected position.

Before the surgery, CJ will need to have an x-ray, CT, EKG, and some other tests to confirm the severity of the condition.  They will use the CT to determine his "Haller Index," which is the ratio of the distance between the inside of the ribcage and the distance between the sternum and vertebrae.  A normal Haller Index is about 2.5.  Patients with PE often have indexes from 3.25 to as high as 5.5.  Obviously, the higher the number, the more severe the deformity.  The doctor will also order allergy tests for CJ, to make sure he isn't allergic to Nickel.  Obviously, we don't want to find out AFTER a metal bar containing nickel is inserted that he has a nickel allergy!  If he does have an allergy, titanium bars will be ordered.

Because a lot of growth can occur in a short amount of time at this age, the x-rays, CT, EKG, etc. will be done closer to the surgery.  As of now, we are planning the surgery in mid-July, but it hasn't been scheduled yet.  CJ is actually thinking he'd like to have it done sooner, in order to enjoy more of his summer. 

So, that's where we are now.  I'll post more as we know more.