Care4Conway: Echo Update

Tuesday, August 25, 2009

Echo Update

I hate how these always post in reverse chronological order. . .
Here he is back at the MedInn

With Dr. Bradley this morning

Sleeping this morning with his own blanket and pillowcase!

Getting moved to the floor

In recovery

Construction of new hospital progress

Killing time on playground before cath

Sight seeing in Ann Arbor

Posing with Big Bird near the front entrance

Dr. Bradley (EP) called and gave us a bit of a status update. The main guy that is reading the echo from yesterday evening says that he wants a better view of the mitral valve, meaning they need to repeat the echo. The saw the valve in the cath lab, but the best view of it is actually on echo. So, we are waiting on a call from him to tell us when to go back over to the hospital and have that done. He didn't say whether or not they'd be sedating Connie, but he didn't tell us not to feed him either, so my guess is he'll just cry through it. He's usually such a good boy for all his testing, but he knows something is up and doesn't feel good so he's not having any of this. We had to wake him up a little before 8 am to go down and get another EKG, pacemaker interrogation and hook him up to a 24 hour holter monitor. He'll wear the monitor until tomorrow morning. He's had no bleeding from his cath sites (on both groins) and all seems okay. Just some tylenol for pain. He fell asleep about an hour ago and is out like a light. While we were waiting for discharge he ate a little granola bar and some cheerios and chocolate milk. No nausea!!
Okay--quick echo today at 3. Guess we probably won't hear from Dr. Bove until after that.

2 comments:

Krissy said...: Lets hope the valve looks better on the next echo! Connie is such a handsome little guy! Sofi loved looking at his pictures! lol

Krissy & Sofia LaPres
http://www.sofineedsaheart.com; August 25, 2009 at 10:04 AM
Unknown said...: Sorry there has been so many curve balls thrown your way. It is so hard when you prepare for one thing but another thing happens. We are praying for the echo to look GREAT!!! And that that the doctors are all guided to make the best decision for Connie. You are all in our prayers.

Nicole Hoagland mom of Lorelei HLHS
cp: loreleih; August 25, 2009 at 1:32 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.