Care4Conway: 6/1/08

Friday, June 6, 2008

Weight Check Today

The dietician came out today and brought her scale. Connie's weight is down from 24 even on her scale two weeks ago to 22 pounds 13 ounces. That's just into the 50th percentile for age but less than the 10th percentile for height. Meaning, he's long and skinny, just like his Daddy and Sissy! We are disappointed, but feel it is solely due to his illness and we are relieved that he is back to normal intake. Hopefully Dr. Brady agrees next Tuesday!

Saturday, June 7th @ 7:05 the River City Rascals take on Washington and there is a promotion to benefit the American Heart Association. Proceeds from ticket sales (make sure you mention you are buying tickets for the AHA fundraiser) and from 50/50 raffles will benefit research toward finding better treatments/cures for Congenital Heart Defects! If the weather is nice we plan on attending. See their website for more details.

Thursday, June 5, 2008

He's Finally Back!

Here are some cute recent pics:

Today was the first day Connie has really been himself again. He ate every meal and snack without a fight and is back to about two jars/meal with about 2 oz. of milk each time and 2 snacks of one jar each along with 2 oz. at his evening snack and 8 oz. of Carnation instant breakfast at his afternoon snack. Yay! He's back to playing on his own and roaming all over getting into everything. It's been nice to be able to let him play and start trying to get some things done around here. This house was beginning to fall apart while he was sick!

We went this morning to pick up his Sure Step foot orthotics. You can barely see them with his shoes on, which he has to wear with them since they are slippery on the bottom. They said to gradually increase how much he is wearing them until he will have them on 8-10 hours per day. Usually they recheck them every three months but I'm sure our PT will evaluate them regularly to see if they are rubbing or need to be tweaked.

Tuesday, June 3, 2008

Finally Turning a Corner

Connie had his last bout of diarrhea Sunday night and is just now starting to show flashes of his old self. His appetite went to zilch and he got a bit on the dry side. We were concerned when he had the sunken eyes thing going. He refused all foods but we finally got him to drink the Carnation Instant Breakfast like it was going out of style. Today, we were at our wits end with the mealtime struggles and he ate 75% better when his OT was here. Little Stinker. Looks like we (mainly me) have to change our attitude so he doesn't sense the stress and respond with negative behaviors. He ate his snack of plums just fine three hours later so hopefully we're on the road to getting back on track with eating. The true test will be Friday when the dietician comes and weighs him. Then we follow up with the GI doctor a week from today to see what she says about leaving the tube out longterm.

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.