Care4Conway: 2/17/08

Saturday, February 23, 2008

Heart Walk 2008--Get Involved!

The 2008 Heart Walk is coming up on May 3rd. Mark your calendars now and plan to join us at Frontier Park in St. Charles as a part of Team Care4Conway. We are so excited to be able to have this opportunity to be a part of something tangible to help raise awareness and funds for heart defects research.

Click here for info on the walk and you can register to walk right there. Be sure to put that you are registering to join the team "Care4Conway" (no spaces). If you can't walk, you can make an online donation. You would go to "General Team Donation" just to donate or "Team Page" to join and walk.
If you have any questions, please email Erin at ekbeckemeier@yahoo.com! Our goal is 20 participants, but I'm sure we can get a lot more than that. Depending on how many we have, we may get special Care4Conway t-shirts printed up to wear that day.

Thursday, February 21, 2008

Standing Movie

Photo and video editing at www.OneTrueMedia.com

Wednesday, February 20, 2008

Steady as a Rock

Conway got weighed this morning and is up another three ounces! Yay! I was starting to stress out a little since he was hovering at that 22 lb mark for so long and debating with myself over whether or not to fortify the daytime feeds to increase his calories or keep his daytime feeds at 180 ml but increase his night time feed back up another 40 or 80 ml. My stress was relieved today when the nurse told me that she calls and leaves a message every week for the GI doctor telling her the weight and if she was wanting us to adjust his feeds/increase his calories, she'd call us or have us come in for an appt. to discuss. I just feel like the pressure is off me now and I can let the doctors decide!

He needs to get to sleep for his afternoon nap (so he's rested for his PT this afternoon) but he is in there just talking away. I think he's experimenting with language a bit and likes to hear himself so I'm not upset in the least. It is actually reassuring that he is doing this. The other day Greg was changing his diaper (yes, he does occasionally do this:) and Connie was rolling all over and hard to wrangle and get the new diaper on. Greg looked at me as if to say, "I wish he would sit still" but I quickly reminded him that we ought to be incredibly thankful that he's finally moving a bit more and wants to get around and explore.

We think he's getting closer to crawling. When positioned, he'll stay on all fours and hold his head up for a few seconds. He's just not the type of kid that is highly motivated to move. He'll reach a time or two for an object that is a ways away from him and if he doesn't get it, he doesn't fret. I guess what I'm trying to say is he gives up easily! Oh well. I guess we just haven't found the right toy to motivate him with yet!

Monday, February 18, 2008

New Toothbrush

Connie got his first "toothbrush" today. It's a little rubber brush that fits onto the end of my finger and it came with some fluoride-free toothpaste. I hesitated to get it because I was pretty skeptical about his willingness to allow me to brush his teeth. Most normal kids aren't too keen about getting their teeth brushed at this age, let alone a kid with the oral aversion issues he's faced. To my surprise, he loved it! The first taste of the toothpaste caught him off guard, you could tell, but he quickly began to enjoy the ticklish feeling he got from me rubbing his teeth and gums. This kid surprises me every day.

He's advancing toward the goal of all feeds being during the day. He now gets 180 mL (six ounces) four times per day and his overnight feeding is 370 mL. We are fortifying the overnight feed to 24 calories/ounce using Pregestimil (a predigested formula added to the breastmilk). His weight has been steadily hovering around the 22 pound mark so we'll see if adding the fortifier to the daytime feeds is on the horizon when the dietician comes this Friday.

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.