Care4Conway: Prayers are Working!

Wednesday, June 17, 2009

Prayers are Working!

Right after I signed the consent (after hearing about the possibility of perforating the esophogus and emergency surgery, stroke, etc.) for both procedures, they hooked up the interrogation device for the pacemaker and Dr. VanHare discovered that Conway is back in NORMAL SINUS RHYTHM!! On his own (well, more likely with the help of God), he has a normal atrial rate. Therefore, there is no need to proceed with the TEE or cardioversion. I told them I didn't believe them. They then got on with the investigation of why that mode switch isn't switching. They've paged Medtronic to figure this out because the initial suspicion is now thought to be uninvolved. While they try to figure out this pacemaker and tweak the settings, they are getting to the business of giving him his 'loading dose' of amiodarone and getting the Heart Failure under control again. Thank you God for listening to all of Connie's prayer warriors and sparing him these procedures.

That was the good news. Now for the not so good. He will be here "at least five days" according to the docs because they think he could go right back into flutter at anytime, especially since the amiodarone doesn't really become effective for 7-10 days after it's begun. He will likely be on Coumadin much longer now too than the three weeks we were originally planning on because they want to keep him on it until they feel confident that the amio will control the flutter. That way, if he goes into flutter again and is already at a therapeutic level then he can be cardioverted right away and it would make our life much easier than waiting for his INR to get up and risking the clot issue. It would be the safer way to go, speaking of flutter. Of course falling and bleeding wise it is not so safe, but you have to weigh the pros and cons, I guess. I'm pretty bummed about being here for five days at least. I know I feel more comfortable with him being monitored closely, I just think about poor MK and everything else that one deals with with a stay that's longer than a day or two. Okay, enough of my pity pot! Thank God our little boy is avoiding yucky drugs and risky procedures. For all we know, there was a little clot hidden somewhere in there that wouldn't be visible on TEE due to the baffles and he'd have had a stroke or something major afterward.

God is good, all the time. All the time, God is good (even when I start questioning after six needle sticks in a 4 hour period!).

6 comments:

Anonymous said...: Praise God! Sr J; June 17, 2009 at 11:52 AM
Donna Beckemeier said...: Our Great God always knows what He's doing. You hang in there, take a deep breath and hold on to faith. I am thankful that the procedure has been avoided. And hopefully they will get that little gadget figured out and fixed.
We love you all and continue our prayers.; June 17, 2009 at 11:53 AM
Donna Beckemeier said...: I really wish I could be there for you right now. But know that you are in my heart, thoughts and prayers.; June 17, 2009 at 12:07 PM
Unknown said...: You're in my prayers, always! God is good, all the time :-)

love,
Morgan; June 17, 2009 at 1:19 PM
Unknown said...: Praise the Lord! I'm so glad to see this update. Praying that he will stay in NSR while loading the Ami.
*sigh* I know you didn't want to hear 5 + more days....Eli was in for 3 weeks when he received his Ami load. Praying this is NOT Connie's experience!

Take care!; June 17, 2009 at 1:58 PM
Jenn said...: our thoughts and prayers are with you and pray that you don't have to stay in the hospital too terribly long. i know every day is long, but i pray that nothing will come up during his stay and that the meds do what they need to.; June 17, 2009 at 3:37 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.