Care4Conway: Follow-Up

Monday, February 23, 2009

Follow-Up

Took Mary Kathleen to her follow-up with Dr. Kane (plastic surgeon) today. He said her incision looks great and just to keep it moist with neosporin or vaseline. She was very social and told him all about the bracelets she was wearing and her Max and Ruby shoes and he invited her to his house to see all the bunnies out in the yard. She told him how Belle likes to eat bunnies too:( He said she couldn't be any cuter.

As for her hives, she's been taking Claritin since last week and hasn't had a single rash or bump or lump of any sort. She has complained about pain in her feet but nothing visible is wrong with them. Interesting note: ever since we started her on the Claritin, she has had a very noticeable tic where she twitches her eye(s). It is virtually constant. Back in the fall she started with a throat clearing tic of sorts that the doctor told us to ignore completely. That one has stopped and now it has manifested into this eye blinking, twitching thing. Doctor Davis said that if the hives were from a virus, it should be out of her system by now so we are stopping the claritin and will watch to see if they come back. We are also hoping that as the claritin leaves her system, so will the blinking. Dr. Davis' nurse, Chris, said it best when I was on the phone with her Friday, "She continues to be a mystery."

My mom got results of the MRI on her back and the spot they thought might be bone cancer is not! Praise God! It is just arthritis that has dissolved that portion of her spine. For now she is holding off on any surgical procedures while they schedule multiple back surgeries for my dad this spring. Remind me not to get older.

Thanks for keeping us in your thoughts and prayers. This journey called life would be a heck of a lot harder without all of you in our lives.

p.s. Yesterday I took the kids to the Valentine Party for the heart families at Children's Hospital. I couldn't take pics there b/c I was too busy with two kids trying to do crafts and snacks and everything else, but I did get a couple of pics of the two of them in the car on the way home. I think the pics speak for themselves! Well, the pics will have to wait because I can't seem to locate the camera at the moment and I need to go to bed. Now you have something to look forward to for the next post!

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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.