Care4Conway: 4th Cath Update--Disappointment

Monday, August 24, 2009

4th Cath Update--Disappointment

Ugh. Dr. Bradley was unable to induce a single extra beat. He couldn't get Connie into atrial flutter at all so therefore they could not get a map and could not attempt ablation. No mapping means no information for Dr. Bove either. He said he does think there are a couple of places that he is pretty sure are causing some problems, and that Dr. Bove could possibly still try to freeze those areas during surgery on Thursday, but now they are not so sure that he will even want to go ahead with surgery give the total picture. We are in limbo right now. Dr. Bradley is calling Dr. Bove now and said they all need to put their heads together and come up with a plan. I asked if those discussions could involve Dr. Bromberg and he said he is certainly going to get him in on this. After they all talk, Dr. Bove will talk with us and we will decide together what to do. He may go ahead with surgery and send him home on amiodarone for another year and then try again at that time to do an EP/ablation or he may say send him home now and manage the leaky valves for longer. I would love to avoid surgery, but I don't think I can deal with Connie for another year or more with his current level of decreased activity and increased neediness! We'll see what they say. He should be leaving the cath lab in the next few minutes and heading up to recovery. They'll call me when he's there and I can come be with him. They are going to watch him overnight, especially his blood levels. They are keeping his arterial line in so I don't even know if I'll be able to hold him with that in. Hopefully I can. He's much happier that way. They said they think they replaced all the blood he lost, but that he might have been a bit low to begin with and they wrote orders for him to get more through the night if needed to bring his levels up to prime if he is indeed to have surgery on Thursday.

Dr. Bradley said his lovely nurse who prepped everything that would be needed for today was so let down by this. She put so much work into this case and she told him it was like she prepared a huge Thanksgiving Dinner only to have the dog eat the turkey! I did laugh when he said that, but I can't help being disappointed. We wanted so badly to get EVERYTHING fixed while we were here and now it looks like there's the potential to get nothing repaired, just go home as is and wait. Pray now that Connie will be okay when he wakes up and not nauseous or too fussy. Pray that he has a good roommate and can get some rest tonight while he's inpatient and that he feels "all better" tomorrow and can get out of the hospital for a couple of days.

3 comments:

H. James said...: Hmmmm. I don't know quite what to say. I'm disappointed the EP study wasn't more fruitful (or should I say flutterful - ha!).
I hope Connie is recoverying peacefully and you get some positive news when you speak with Dr. Bove. Thanks for the updates.; August 24, 2009 at 6:52 PM
Annie Whitelaw said...: I'm praying that all goes well with Conway this evening and that you both are able to get a good nights sleep.; August 24, 2009 at 8:04 PM
Aaron and Erica said...: I'm so sorry that things did not go as you had hoped. I'll be praying that the Dr.'s can come up with a plan to address all of Connie's issues.; August 24, 2009 at 8:46 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.