Care4Conway: Good News and Bad News

Thursday, November 6, 2008

Good News and Bad News

The good news is Connie can no longer be called "four eyes." He was cleared from wearing glasses today. The eye doctor said that he is right on the borderline of needing them and he told Greg that if you asked twenty-five doctors, half would say he should wear them and half would say don't worry about it. He is not cross-eyed. He is not bumping into things. These are symptoms he told Greg to look for as reasons to come back in for a check-up. Otherwise, they'll wait to check him again until next June! I knew it. God is correcting his vision and we are so thankful.

The bad news is that he is still quite fussy. He was high maintenance all day and didn't even enjoy PT the way he usually does. Ms. Deb even noted that his endurance was down some from his normal level. He seems quite tired (hmmm. Could that be because he was up from 12am on?) and yet is having trouble sleeping. He had two more bouts of diarrhea today but his appetite did pick up some.

The other bad news is that we're still in limbo with the vaccine for RSV, Synagis. I got two calls tonight from our home health care company that sends the nurse to administer the injections asking me to get involved with the insurance company. They said that while they hate to have to do it, sometimes getting the parents to join the fight is the only way to get an answer from them in a more timely fashion. They have tried pleading with Cigna all about how he is a high risk kiddo and needs his dose and to please put a rush on the review, but it is going nowhere. So tomorrow, I'll be calling Cigna back yet again. I almost have the 800 number memorized I've had to call it so much already this fall! I will say this much; their automated phone system is much more user-friendly than Anthem's.

1 comment:

Gudrun Thompson said...: Hey Erin! It's Gudrun - formerly of BDC. Yeah, you read correctly - "formerly". I left there about 6 weeks ago to pursue another opportunity for better pay & benefits doing basically the same things. Anyway, my question is about the Medicaid you had found for Conway back when we knew we couldn't get him on the group medical. Susan who used to also work at BDC is dealing with her boyfriend's autistic son who they also think has Muscular Dystrophy and although there's group coverage in place right now, there's no guarantee it'll last forever. He's in the mortgage business and we all know how that's going right now! If you could give me a phone number or a computer link or anything that I could pass on to Susan, I would appreciate it. Conway is growing and growing and I enjoy reading your blog and seeing the new pictures!

Gudrun; November 14, 2008 at 8:26 AM

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.