Care4Conway: Anointing of the Sick

Sunday, February 8, 2009

Anointing of the Sick

Today at Mass they had a special time after the homily where the priests asked if there were any in need of healing and called those forward to be anointed. I took Connie up and Fr. Jim anointed him. Of course I had so many memories and feelings come rushing over me at that moment. From thinking I'd never hold him alive again to how I felt last Easter when that stranger lay hands on him and his true recovery began. I had tears of joy just at the fact that I could kiss his forehead and that he's with us and doing so well today. Cute story from today: Connie had been rather fussy/whiny/clingy all day today. He was following me around and saying "uh, uh" (up, up) when I was trying to put on make-up, trying to iron, trying to make dinner, etc. Finally, one time when I picked him up I looked at him and asked, "What is going on with you, Mister? Are you sick?" He immediately put his hand on his forehead and then touched each of his palms. I think he was associating me saying the word "sick" with getting anointed and he was mimicking the actions of the priest touching his forehead and palms. Isn't he smart? Maybe he was just practicing. I, for one, think he's going to be a priest. I sure hope so. As soon as we found out we were having a boy, I was already hoping he'd either grow up to be a priest or in the military, as I think those are about the two most honorable things a man can do. Turns out the military won't take him with a bum heart so I guess it's off to the seminary!

Mary Kathleen continues to do well after her surgery. She hasn't had anything at all for pain since one dose of ibuprofen on Saturday morning. She has been careful not to bump her head since she doesn't want it to split open. She was a little bummed out on Saturday with the nice weather that she couldn't ride her bike but I didn't think it was a good idea for her helmet to be rubbing on that incision and I wasn't going to let her ride without a helmet. She settled for a ride in the wagon and playing at the park. She loves digging and her fingernails prove it! Who knew she liked getting messy? This is a kid who never wanted to play with play doh. They are getting excited to go visit Grandma Marybelle in Florida during spring break. Especially now that they have learned that they can dig in the sand!

Finally (I know this has been a long one, Michael!), I wanted to make remind everyone that this week is Congenital Heart Defect Awareness Week. Did you know that CHD's affect more kids than autism? Bet you didn't because you don't really hear celebs speaking out about it. It hasn't become anyone's "cause" really and those that are doing something aren't getting a lot of press. Fox News' Bret Baier has a 19 month old son with a complex heart. He was interviewed about it on ET and last year he gave $1 million to CHD research.

We are going to walk again this year in the St. Louis HeartWalk. Instead of walking in St. Charles, we are going to walk at Forest Park because several other heart families we know will be walking there and Children's Hospital sets up a tent with lunch and lots of the staff that work with these kids come out for fun and fellowship. We'd love it if you could walk with us. If you can't make it on May 2nd, please consider making a small donation to the American Heart Association. You can get more information here.

Here are some CHD facts for you to consider. It is our hope that you would just tell one other person you know one thing from this list to help increase awareness.
(heart friends, bear with me as I'm sure you've read this list several times this week already:)

© CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

© In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined; yet funding for pediatric cancer research is five times higher than funding for CHDs.

© 1 in every 85 babies is born with a CHD . (Updated statistic as of January 2007 by American Heart Association – shows a 22% increase from 1985 to 2000.)

© Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

© This year, almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

© 91,000 lives are lost each year in this country due to congenital heart defects.

© Approximately 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

© There are 35 different types of congenital heart defects. Little is known about the cause of them. There is not yet a cure for any of them.

© Congenital heart defects occur frequently and are often life-threatening, yet research is grossly under funded. Only one penny of every dollar donated to the American Heart Association goes toward congenital heart defect research.

© In the last decade, death rates for congenital heart defects have declined by almost 30% due to advances made through research.

© Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

© Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured" (like Connie's).

© More than 50% of all children born with a congenital heart defect will require at least one surgery in their lifetime. For more complex defects, some children will have to undergo at least three open heart surgeries.

© Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

© During the year 1998 in the United States , 55,000 hospital admissions for treatment of CHD were recorded, a statistic which includes an estimated 20,000 operations performed for repair or palliation per year.

© The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

Information provided by The Children’s Heart Foundation (www.childrensheartfoundation.org), Saving Little Hearts (www.savinglittlehearts.com), American Heart Association: Statistical Update 2001, American College of Cardiology , 32nd Bethesda Conference: Care of the Adult With Congenital Heart Disease

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Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.