Care4Conway: 2015

Monday, August 3, 2015

Upcoming Surgery

Well today was Connie's annual heart check up with Dr. Bromberg. It was just about the last thing to check off our list of things to do this summer. And what a summer it was! We were as busy as ever. Mookie played lots of tennis, including a week away from home in Urbana, Illinois at a tennis camp at the University of Illinois. She and some friends from school participated in an art camp and a robotics camp in town as well. She even flew by herself to Chicago for a tennis tournament! Conway had scout camps, VBS and two sleep away camps, including his first year as a "big kid" camper at Camp Rhythm. He had lots of fun and made new friends to boot! His other big news is that his wish to go to LEGOLAND was granted and we traveled to Orlando right after July 4th for 6 hot, but wonderful days enjoying the theme parks and all that the Give Kids the World Village had to offer.
Karsten and Frankie are doing well, too. Kar will be starting kindergarten (primary) and finally gets to go to "Connie's school". Frankie is obsessed with Anna from Frozen and asking (demanding) for things all day long. Oh! I almost forgot. We moved. Again. It took almost a month from start to finish, but we did it. Hopefully it is the last time we will move... EVER! Tomorrow I am taking the kids to Dallas for a quick visit with grandparents and cousins before school starts.

Back to the appointment. Things went great. He is in the 94th percentile for height and 84th for weight. All the routine questions and tests were a breeze. We skipped the echo this time since he'd had one in January. His pacemaker showed 2.5 years of battery life left. However, when Dr. Bromberg came in, he shared that the lead issue we'd been following for close to the last two years is finally to a point where it needs to be dealt with. He had us get a 24 hour holter monitor to track exactly how much his pacer is over sensing and delivering extra beats and skipped beats. When listening, he hears an increase in the frequency, and the pacemaker interrogation backed that up. He'll compare the holter results with last year's to be sure, and then consult with the team in Michigan that placed the pacemaker about getting on their surgical schedule to replace the atrial lead wire and the pacemaker battery itself, likely early this fall. It should take a couple weeks before we really know definitively what the plan will be.

Thanks for checking in! I want to post pictures soon!

Saturday, March 7, 2015

First Communion Sneak Peek

I took Conway to school today (on a SATURDAY... you would have thought I was cutting off his arm the way he carried on this morning) to have his portraits taken for First Communion. His actual First Communion is April 11 (all are welcome!). After the portraits were finished I took a few snapshots with my phone. I think this one turned out really cute and wanted to share it.

Tuesday, March 3, 2015

8 Years Old Today!

Greg and I were already on our way to the hospital this time 8 years ago. Connie entered the world at 2pm on March 3rd and has been filling our lives with a deeper love than we knew we were capable of ever since. Here he is this morning before school. He loves all things Nerf gun and is excited to share peanut butter cookies with his class today. This evening we are celebrating with Grandma and Grandpa at Cracker Barrel and tomorrow evening he has a laser tag birthday party with his classmates.

Thursday, January 15, 2015

Prayers Answered!

Connie saw his cardiologist this morning and, after 2+ hours we left feeling quite relieved. His exam was normal, other than a bit of a louder murmur. His echo was unchanged from August. The doctor is blaming the elevated CRP test on inflammation due to a non-specific virus. He really made over the fact that Conway's chest x-ray looks so much better than the last one on file. His heart has a nicer contoured shape and everything. He said we were absolutely doing the right thing by bringing him in, and to come back in two weeks or so if the chest pain is still present and we will consider a stress test. Thank you so much for the prayers!

Unplanned Visit to the Cardiologist

Conway has not felt himself the past week and a half or so. Especially concerning are reports of chest pain, mainly during exercise in P.E. or when wrestling with Karsten at home. He looks pale and has cold extremities. We have done all we can do to avoid seeing the cardiologist, but after results of labwork came back yesterday, the pediatrician's office wants him seen by Dr. Bromberg today. So far here is what we know: Chest x-ray is normal, CBC red/white blood cell counts are normal, pacemaker check was normal, holter monitor last week of Dec. was normal. He had two labs come back funny yesterday. One was the sed. rate and the other was the C-Reactive Protein test. It was high at a value of 13, where 0-1 is in the normal range. This indicates inflammation. We are unsure as to the cause. Something minor like a virus could possibly explain the result, but he has had no fever and blood cell counts don't indicate he is fighting infection. This test is used to measure risk for coronary artery disease, and given the chest pain he's been experiencing, the pediatrician did not feel comfortable dismissing this lab result. Please pray for wisdom for the doctor today as he evaluates Connie, and ask God to provide Greg and me with peace as we watch the clock until the appointment. My guess is that they will do an echo and possibly a stress (treadmill) test.

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.