Care4Conway: 8/2/09

Thursday, August 6, 2009

Conway from 2nd Birthday until Now

This one's even shorter. . .

Photo and video editing at www.OneTrueMedia.com

Wednesday, August 5, 2009

Reminiscing

I got behind on making little video montages so here a brief rundown of our boy from one to two years old. It's less than four minutes long.

Make an on-line slide show at www.OneTrueMedia.com

Tuesday, August 4, 2009

that he wants the cardiac cath and EP study done there at U of M. On Monday, 8/24, Connie will have a super busy day. He's set to have his pre-op work-up, cardiac cath and EP Study all done in one fell swoop! I sure hope they have sped up the pre-op work-up process since last time it took 8 hours! If it takes that long this time, they'll never have time for the rest. Kim at Dr. Bove's office called this morning and said that the EP Study is what should take the longest. So, we'll need to be up there no later than Sunday night and then after his big day on Monday, he'll have two days off before Surgery Day. She didn't say whether or not he'll be admitted Monday night. It may depend on how late he comes back from the cath lab. With having all that testing early, he may not even get in there until the afternoon and who knows how long it will take them. They may just keep him there overnight for observation and then let us go early Tuesday morning.
Our happy boy is feeling better!

Connie wearing Sissy's sunglasses

Connie showing his big Cousin Nick a thing or two on the iPod at Anna's birthday party last weekend

Monday, August 3, 2009

Actually. . .

they may not be doing any ablation in the cath lab. It is likely going to be more of a diagnostic cath. They may do an EP study, but it is probable that the ablation will be surgical, meaning Dr. Bove would do it while he's working on the valves.

Schedule update

U of M should be calling in the next day or two to give us the date for the catheter ablation. Dr. Bromberg just emailed and said that it will be done in Michigan, probably 1 or 2 days before surgery, which would push up the pre-op stuff to the day before the cath. Looks like we'll be heading to Ann Arbor the weekend of 8/22-8/23.

This is still so unreal. I'm sure it will sink in the closer we get. Right now we're just on a pink cloud that we have hope for a surgical repair and can avoid any more talk about transplanting!

Got the Date

Michigan just called a little bit ago and said that Dr. Bove is offering us surgery on 8/27/09 for aortic and mitral valve repair with a pre-op day on 8/26/09. We're still waiting to hear where or when anything will be done with the atrial flutter, either in the cath lab or during surgery.

We are thrilled that our little man has a chance at a repair of his own heart rather than transplantation! Again, thank you prayer warriors for lifting Connie up. Now we just need to focus our prayers on staying healthy until the surgery date and that God will guide the medical team that cares for him before surgery and during recovery.

We'll update more when we have more info.

Now that's more like it!

I received an email from Dr. Bromberg saying,
"Received a note from Dr. Bove Friday evening. He was on vacation. Hadn't seen the echo yet, but sounded inclined toward valve surgery. Hopefully will have a definitive recommendation early in the week."

Just thought I'd brighten your day since mine's a little brighter today!!

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.