Care4Conway: Conference Results

Wednesday, July 29, 2009

Conference Results

Well, we heard what St. Louis' opinion is for treating Connie's leaky valves. Are you sitting down? You better, because what I'm about to type will make you drop. Their answer is heart transplantation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That's right. They, specifically Dr. Canter who is the head of the transplant team, feel like re-operation would be a disaster which would then make transplanting him after the operation a bad situation. They want to cath him and get him listed as soon as possible. Dr. Bromberg gave more details about how the conference went and let's just say, we're taking it as a sign from God that we should just stick with the folks up in Michigan. Now, if they come back saying the same thing, then we'd just stay here and wait to be transplanted locally, but we (and Dr. Bromberg) are hoping the SLCH guys are wrong on this case.

We're a little taken aback by this news and Greg especially is struggling with it. Please lift our little family up in prayer, that God will give us peace in the words he has told us in the past. He has spoken to us through his angels. He told us Connie would be healed. He told us he would live a long and happy life. We believe Him and we trust in those words with all our hearts. Also, please pray that the Michigan team will be guided by God's hand and given extra wisdom when they decide what their plan would be for our boy.

ETA: Dr. Bromberg also gave us some med changes and we are decreasing the Lasix to .8, down from 1.3 and skipping Thursday's dose. We're also dropping the Amiodarone to 9.5 from 10 ml's (of the super concentrated stuff--starting 7/31 we have to throw that out and use the less concentrated and we'll give him 19 ml's of that).

8 comments:

Unknown said...: Erin

My heart is breaking for you and your family right now. I am praying for Connie's continued strenght and for the families strength and courage to make it through every comes your way. I will also pray that the doctors all have the strength and knowledge to make the right decision for your little boy. Connie is so lucky to have you as his mother and to have such a wonderfull support team. If there is anything at all that I can do please please call I am thinking of you guys everyday.

God Bless and Heart Hugs,

Nicole Hoagland mom of Lorelei HLHS; July 29, 2009 at 5:41 PM
Lisa P said...: Remember, we were once told in St. Louis that the FONTAN would be the best course for Grant. Look at him now - post DS. GOOOOOOOOO Michigan!!!; July 29, 2009 at 6:16 PM
Faith M. said...: I am so praying that SLCH is wrong!; July 29, 2009 at 6:18 PM
Anonymous said...: What devastating news, Erin. My heart is with you, for this precious little boy and for your whole family. You all have been through so much. I pray that God gives the strength to believe in what he has done and said through his messengers to you. This is such a blow, when all seemed to be going so well. May God be with you all in these dark moments. Love and prayers always, Sr Josephine; July 29, 2009 at 8:17 PM
Unknown said...: Oh Erin,
I am just numb. I can't imagine what it felt like to hear those words from your doctor.

With that said, God is in the miracle business and He has let you know that Connie will live a long and happy life. There are many ways in which this could happen. Stand strong and do not lose hope!

We'll be praying for you all~; July 29, 2009 at 10:09 PM
Anonymous said...: Our continued prayers are with Connie, Mary Kathleen, CeeCee, you, and Greg this night and every night. Good Lord please guide Michigan's recommendation on behalf of little Connie, Amen.

Uncle Gil Aunt Maureen and the kids.; July 29, 2009 at 10:34 PM
Michelle K said...: I am praying that God grants you the strength you need.

Love to you all!; July 29, 2009 at 11:13 PM
Anonymous said...: You and your family are in our prayers daily. Give everyone a big hug from us!!!!!; July 30, 2009 at 6:05 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.