Care4Conway: 2/5/12

Friday, February 10, 2012

Crazy Times and Prayer Request

Okay, prayer warriors! We need you to storm heaven again. Life has been pretty hairy here lately and is about to get even more so. I am sure things could be much worse. I remind myself that we are living life at home and not cooped up in some hospital so for that especially I am thankful.

Here are our specific needs for you to keep in mind:
1) Kindergarten Screening. Conway goes tomorrow (Saturday) morning for testing to see if he qualifies for entrance into a private school. We are especially nervous given his recent tears over attending said school. I am pretty sure he might think he's going to be switching schools tomorrow and no matter how many ways we try to explain it, he is virtually inconsolable on the issue. Please pray that God calms him so that he can do his best and showcase the gifts God gave him.

2) Oral surgery and pre-op appointments. We got several calls today regarding his upcoming oral surgery scheduled for 3/6. We were told that the anesthesiologist wants to examine him and also needs clearance from his cardiologist. While I appreciate their thoroughness I am disappointed that they won't take our card's word. Rather, they are requiring a full cardiac work-up prior to the surgery. Conway was just seen in Sept. and cardiology assured them that nothing major happens over the course of a few months. Don't get me wrong, I appreciate the fact that he needs to be his best before going under, but I also am upset that this is turning into such an ordeal. He was put under for his broken arm surgery at the same hospital in summer of 2010 without all this fanfare. And at that point, he was less than a year out from major open heart surgery. He's been healthy now for 2.5 years so I'm puzzled as to why everyone's so alarmed. Please pray that the appointments go smoothly, efficiently and that there are no surprises. It also wouldn't hurt if we could be so lucky as to get into cardiology and anesthesiology on the same day!

3) My knee. I blew out my ACL and have to have an ACL reconstruction on 2/16. Greg and I are getting more anxious by the day about what my limitations will be as far as taking care of the house and kids. My doctor says to expect to be out of work for 4 weeks while I'm on crutches. Trying to fit in PT appointments with our already busy schedules seems daunting! Not to mention, Greg is spread so thin right now we don't see how he can take on another task (caring for me, the gimp).

4) My grandma. Evangeline Veronica O'Leary passed on 2/3 with her family by her side. She was almost 98 and really enjoyed Conway. Conway knew that he and great-grandma shared a special bond; they'd both had open heart surgery. They had matching zipper scars on their chests. This last year or so she's been battling painful injuries and broken bones and been in and out of hospitals and rehab nursing homes trying to get better. Most young children are apprehensive or afraid of visiting such places, especially when older adults try to talk to them. Not our Conway! He genuinely greeted every patient he passed and asked to go visiting quite often. Conway doesn't grasp the fact that we're not going to have those opportunities any more. Today we went to her apartment bldg. to celebrate her life with the other seniors she befriended and he kept asking to go up the elevator to her apartment to see her. He knows she lives with Jesus now, and that she's all better, but I don't think he really gets it. He still prays every night for her and that her bones will heal and she'll get well enough to go home. We just keep telling him she IS home now, but her home is in heaven.

As I said, these "problems" are so very minor compared with some. We are so grateful to all of you who still keep up with us and our journey. We hope and pray that God continues to reveal himself to us through your thoughts and prayers.

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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.