Care4Conway: Ella Update

Friday, July 31, 2009

Ella Update

Ella, the little girl who's DS was postponed a couple of weeks ago, did indeed have her surgery today with Dr. Bove. Just got an update from her mom that she is out of surgery and did great. Dr. Bove described her as "echo perfect" when referring to her heart function. Please pray that her recovery goes as smoothly as her surgery.

All is well in ConnieLand. We're having a better day too. Talking with our pastor helped a lot and we also found out that this weekend at all masses they are doing "Anointing of the Sick". We will most certainly have Connie participate in this sacrament. What perfect timing!

Dr. Bove's office has received the info from Dr. Bromberg. I called this afternoon to confirm and Kim, his secretary, said that she was uploading the CD into their computer system as we spoke and was faxing Dr. Bove the accompanying note. She said he had been out of the office for a week and has a mile-high pile on his desk. Hopefully Connie's report falls on the top of the pile and will be looked at and addressed first. The next step is Dr. Bove will contact Dr. Bromberg. He may surprise us and call us too, but we're not holding our breath. Dr. Bromberg said to give him until the middle of next week to hear something, so it will be an exercise in patience for us for sure.

3 comments:

Anonymous said...: Thanks, Erin, for keeping us in touch. Prayer does change things, and I know all of this is in God's loving hands. He will not let go of Connie, neither of you and Greg. He will give you the strength and patience you need. Somehow, this is in His plan.
Love, Sr Josephine; July 31, 2009 at 4:25 PM
Unknown said...: Erin

So happy the surgery went well we are continueing to say prayers. We will be praying for your continued strength and patience and for Connie to have good days.

Heart Hugs,
Nicole Hoagland mom of Lorelei; July 31, 2009 at 5:32 PM
H. James said...: Hi Erin-
We've been on vacation for a week & missed all the goings on. Wow.

I am glad the Lasix seems to be helping and Connie is feeling better. You post about a new "good day" really hit home for me. We have had those feelings for a long time with Bailey and sometimes have those stark reminders when watching other children do normal kid stuff.

Anyhow, I am keeping up hope that Dr. Bove will come back with another answer besides transplant for Conway. There can be vast differences in opinion with these things, as you know, so hope for antoher option seems very reasonable!

Thank you for all of your updates. You and your family are in our thoughts.

Heather, Tim, Bailey & Libby; August 2, 2009 at 10:00 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.