Care4Conway: Another Yummy Day!

Monday, May 5, 2008

Another Yummy Day!

We went to the park this afternoon. Here are a few pics.

Here's the pruneface himself

Connie went tubeless again today! He had a big bm and two small ones and more wet diapers than yesterday.
He's eaten:
1 jar of stage one prunes and 1/4 jar stage 2 pears & pineapples mixed with reddi whip cream
1/3 CUP Progresso Vegetable Beef Soup (pureed in blender)
sips of strawberry milk
3.5 oz of water
1.5 oz of half and half and 3 bites of chocolate pudding (not the sugar free kind!)
H20 at the park
1/3 CUP Progresso Chicken Noodle Soup with Carrots (pureed in blender)
1 oz. of half and half
1/6 CUP of fresh mashed banana with whole milk (in the blender) drizzled with hershey's chocolate syrup
20 cc's (almost an ounce) of half and half before bed

At dinner, he actually put his water cup down in favor of the cup of half and half. I bought some today at the store thinking I'd add it to some of his foods to add some calories, but I poured some in a cup for him to drink to see if he would. He loves it! He's definitely his mama's boy! I could drink that stuff by the gallon if it wouldn't show on my hips. Tomorrow he goes to Dr. Brady (GI doc) at 2pm. Say a prayer she lets us keep the tube out.

I got an email today that ProFlowers is donating $10 from every bouquet in the month of May to the Children's Heart Foundation. If you are sending flowers to anyone for Mother's Day or just because, you might check out this link. Finding better treatments for congenital heart defects would make a million moms happier.

2 comments:

H. James said...: Way to go again, Connie! Maybe we'll have to get these two together so he can show Bailey how it's done! Great job!
-Heather James; May 6, 2008 at 8:50 AM
Jessica said...: I am so glad to hear Connie is doing so well with solids. It just had to be on his time. It is so hard to be patient...I know I always want things on my time. Any way, I also wanted to thank you for putting out the word about ProFlowers. I was on the fence about what to do about Mother's Day and that just helped me make my decision. I clicked on the link and ordered away! Have a great Mother's Day, Erin.
-Jessica Martinez; May 6, 2008 at 2:06 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.