Care4Conway: Surprise Visit

Thursday, December 2, 2010

Surprise Visit

You know Connie. He can't ever seem to go the full amount of time between appointments without throwing us for a loop. The last couple of weeks or so he's been showing some signs of tiring more easily and we were just keeping an eye on him. Well, his school has called the last two days reporting that he's been laying down and complaining of a headache and chest pains. Dr. Bromberg had a cancellation today so we got him in. Nothing seems different on exam, his sat's are high and BP, HR and RR are all normal for him too. His conclusion is that it is possible that the conduit that connects the pulmonary artery and right ventricle is narrowing and more stenotic even than it was in September, when the echo showed it was narrowing more. He said it's time to get some better numbers and measurements to see what the hemodynamics look like in there and unfortunately, that means a cardiac cath is necessary. I really have mixed feelings about this test. I'm anxious to get a clear picture of what's going on in there and see if it is indeed time to intervene with that conduit. At the same time, it's much harder to subject him to such an invasive diagnostic tool when he isn't in heart failure. In the summer of 2009, the last time he was cathed, we handed him over so easily because he was so sick and it was obvious that his little heart needed help. This time it's so much harder. Yeah, we're noticing some changes in him, but it's not like he's laying on the floor all day watching iPod movies and vomiting everything he eats either.

The cath will be scheduled for some time in January-hopefully with Dr. Balzer, the cardiologist that cathed him in April, 2008 at St. Louis Children's Hospital. If the conduit is showing the blockage to be significant, then he may attempt to stent it open. That could buy us more time before another open heart surgery is necessary to replace the conduit. Dr. Bromberg isn't sure that stenting it would be successful since it's made of gortex and not native tissue, but we'll just have to wait and see.

Please continue to keep Connie in your prayers. Ask God to give him relief from these headaches that he's always complaining of and that he remains pain-free, especially so that he can enjoy these upcoming holidays.

6 comments:

Anonymous said...: Hi guys! I'm sorry to hear of your latest post. I understand each and everyone of those feelings. I just wanted to over my virtual hug and tell you that if you need ANYTHING I am here for you.

Sending heart hugs!

Heather Norman; December 2, 2010 at 4:45 PM
Anonymous said...: I am sorry to hear of this development, Erin. Really, Connie (and you and Greg) have suffered so much, for so long. I will be praying very hard that this all goes well, and that you and Connie can enjoy a wonderful Christmas full of joy and happiness! Prayers are with you always. Love, Sr Josephine; December 2, 2010 at 5:44 PM
Karin @ 6ByHisDesign said...: Erin, What an amazing little boy who is so fully aware of his body and has such a solid grasp of language skills that he is able to communicate these concerns to you all! He is a gift ~ I do pray things go smoothly and what needs to be done is done quickly and cleanly! Onward Christian Soldiers!

Many Blessings, Karin; December 2, 2010 at 9:54 PM
stove said...: Oh Erin I'm sorry! I completely agree that it's hard handing over a pretty healthy kid for a cath. That's what we were worried about this summer but luckily we avoided it. I'm glad they are waiting until the holidays are over and doing it close by will be much less stress for Connie. It's great that his teachers know to watch him. I would feel comforted by that! Have a great holiday! Sending you prayers and <3 hugs!

Steph & Lily; December 2, 2010 at 11:05 PM
stove said...: Oh Erin I'm sorry! I completely understand what you mean when you say it's hard handing over a pretty healthy kid for a cath. I'm glad they are waiting until after the holidays and having it done close will be less stress on you and Connie. It's great that his teacher's know to keep an eye on him! Have a great holiday! Sending prayers and <3 hugs!

Steph & Lily; December 2, 2010 at 11:07 PM
Emmett Joseph said...: Erin, I hate to hear this. Please know that Connie will always be in our prayers, especially right now as you are going through this. Keep us posted!

Missy and Emmett; December 3, 2010 at 9:06 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.