Care4Conway: Relieved

Monday, July 27, 2009

Relieved

I never thought I would say that I was relieved that my little boy has to undergo open heart surgery, but after today's appointment, there is a certain sense of relief knowing that the problems are identified and are going to be addressed. The sooner we address them, the sooner Connie can, as Dr. Bromberg put it today, "get back to the business of being a little boy."

Today's echo showed the valves are leaking badly and Dr. Bromberg feels the biggest culprit and the one that has changed the most is the mitral valve. He also feels like this valve has a great chance of being repaired and still hopes we can avoid the need for an artificial, mechanical valve. The ejection fraction, which was 55% in May, was 32% today. This is a number that shows how well the blood is pumping out of the left ventricle, the main pumping chamber. While 32% is not good, it is also a little subjective since he has been switched. So, it also isn't devastating or anything. Just another number to follow for now.

The next step is to put today's echo and clinic notes on CD to be sent to Michigan for Dr. Bove's and Dr. Dick's surgical opinion. We hope that they will have the opportunity to review the info by this Friday. On Wednesday of this week, Dr. Bromberg will present Connie's case to the team at St. Louis Children's as well and hear their opinion, especially what the EP, Dr. VanHare has to say about his approach to getting rid of the atrial flutter. Given how busy the program is in Michigan, Dr. Bromberg said it would probably be two weeks before Connie could get on Dr. Bove's surgery schedule. He may get preference since he's an existing patient, but it looks as though the likely time frame for valve repair/replacement is middle to end of August.

To help out in the meantime, Connie has been prescribed Lasix (a diuretic) to relieve some of the symptoms and another drug to even out that thyroid number that was off last week.

I'm sure I'll post more details about today's visit later. I'm just not feeling too wordy right now (I know this is a surprise to my friend Michael M.!).

5 comments:

Sarah Beams said...: Hi Erin and Greg,

Thank you for this update! I pray God will continue to lead you towards the path of recovery for Conway. I too, am tentatively relieved. It does seem to be good news that the cause of his difficulties has been identified and that the doctors know how to move forward. I thank God for their knowledge and know-how!

Prayerfully,
Sarah; July 27, 2009 at 3:09 PM
Stacie Kuhlman said...: I am happy that you all have a new plan in place and have a direction to go in. I am praying for you all :)

Stacie in Texas; July 27, 2009 at 3:37 PM
Anonymous said...: Dear Erin and Greg, It has been such a long hard road for all of you. I do feel relieved that they have figured out what it wrong with this beautiful boy's heart, and that there is a solution. Please know I remember you many times a day in prayer and thoughts. May God be with you every step of the way. Keep brave and keep strong. Much love, Sr J; July 27, 2009 at 6:08 PM
Aunt Donna and Uncle Paul said...: One day you will be able to look back and remember when there was all this turmoil, and smile and thank God that you all made it thru. And wonder what you were so stressed about. (Yeah, right). But in the meantime, know that there are so many who love you all and are praying daily (sometimes hourly) for health, healing, wisdom, strength, knowledge, skill, patience, peace, and endurance.
Each of you are in our prayers EVERY day and more so at these trying times.
We love you; July 28, 2009 at 11:06 AM
Uncle Dave said...: I just wanted to drop you all a line to let you know we in Chicago are praying and pulling for you all.

All our love,

Dave, Michelle, Max and Kate; July 28, 2009 at 8:07 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.