Care4Conway: Overdue Update

Saturday, August 9, 2014

Overdue Update

February! That is the last time I posted anything on this page!! That is too long!

Connie is doing well. He just saw the cardiologist for a regular check up and things are looking stable. His pacemaker shows 2.5-3.5 years of battery life left and his function and numbers all look excellent, unchanged. The doctor is happy to hear that he is taking part in activities such as archery, golf, tennis and swimming. He won't have to go back for a year as long as he looks and acts healthy.

this poster makes me chuckle. most patients at this office have a heart that looks NOTHING like this, lol.

Dr. Bromberg, our fav!

He was also excited to hear all about Conway going to his first sleep-away camp this summer. Connie spent a week at Camp WeCanDu, held at Babler State Park in St. Louis County. He went kayaking, visited the Magic House, swam, did archery, martial arts, SCUBA diving and more! He loved it. I swear, this kid was made for camping.

first time scuba diving

Chocolate sauce water slide

after falling out of his kayak

Kelly, director of Disabled Athlete Sports Association, wrapping Connie in bubble wrap at camp

As soon as he got home from there, he attended a cub scout day camp. Then we were off to Ann Arbor for the Congenital Heart Center Patient Reunion that is held every other year. Just like in 2012, his favorite part was dunking Dr. Bradley!

Big Bird was about the only "kid friendly" thing at the old Mott Hospital. He was moved over to the new one in 2011.

Taking his best shot at Dr. Bradley (making a run for the target)

July was a busy month, too! We went to Destin to visit Grandma Marybelle and see the beach for the first time since before Conway was born. He absolutely LOVED playing in the surf, and just got pounded by

waves for hours.

At the end of July Conway attended Camp Rhythm for his third year of heart camp. He is now officially going to be an overnight camper next year. I think he is ready!

Needless to say, it has been a whirlwind of a summer. And that was just for Connie! The other kids stayed busy too. Mary Kathleen played tennis at least 4x/week, competed in Junior Team Tennis and earned the chance to travel to KC to play in the JTT MoValley Sectionals. She also went to sleep away camp (Camp Ondessonk) for the first time, in Ozark, IL. Additionally, she attended several high school camps for tennis, track and volleyball. Karsten even tagged along for a week of vacation bible school with her. Karsten played t-ball this spring and summer and seemed to enjoy it. He is signed up for PK soccer this fall so we will see how that goes. Celeste finished out her club volleyball season in May, played spring softball and continued to work out at the gym three times/week. Greg went whitewater rafting in Tennessee with five buddies and I got to see Las Vegas for the first time in late July when I went there for a math conference. I even won $13.65 on a penny slot machine! All in all, I feel like we packed more in this summer than ever before and we are so grateful to God for the ability to enjoy traveling and spending time together as a family, without much worry about Conway's health. Frances is growing like a weed and the sweetest baby ever. She now says Dada, Mommy, baby, bye-bye, night-night, happy, and makes the sing songy sounds for uh-oh and thank you, but doesn't yet have those exact words. I am surprised she has any words given how we all jump whenever she motions or mumbles for something. :)

Before you know it, we will be posting back to school photos of the kids. Karsten and Celeste start 8/13. Connie and MK start 8/20. I go back 8/12 and am moving to 3rd grade (from Pre-K). I am over the moon excited at this opportunity and have already been working on getting things ready for my my new students.
Thank you for the continued prayers. We are in a very good place health wise and are not taking this for granted. Several of Conway's heart friends from camp or that we know online are having procedures and surgeries this summer/fall and we ask that you pray for them as well, especially Hailey, Holden, Angela, Grant and Maggie.

3 comments:

H. James said...: This may be a duplicate, but that was a fantastic update! Thanks. So wonderful to see all of you having such a great summer together. Love from Wisconsin!; August 10, 2014 at 7:20 PM
Anonymous said...: Hello Erin and Family,
I love to see these successful stories. Carson looks amazing and what a wonderful family. Hard to belive since our time at Mott in 2007. I would love to come to a Mott reunion. Maybe someday we can visit everyone. Say hello to your entire family from Johnny's Mom.; August 12, 2014 at 9:29 PM
Anonymous said...: This is all such good news! All t he children look wonderful, and I really enjoyed the pictures at the beach. (I have never before seen any of those weird worms or whatever they were. Yikes!) God is blessing you with these beautiful children, and I am so grateful that Connie is doing so well. Count on my loving thoughts and prayers. Sr Josephine; August 15, 2014 at 4:42 PM

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.