Care4Conway: Cute Note about Connie's Communication Skills

Thursday, January 15, 2009

Cute Note about Connie's Communication Skills

Today Connie was in the middle of his weekly speech therapy session with Ms. Chris when Nurse Jen arrived to administer the monthly dose of Synagis to vaccinate him against RSV. When Connie looked up and saw Jen, he immediately started shaking his head, "No" and then folded his hands in prayer. It was like he was asking God to deliver him from having to get two shots! Greg, Chris and Jen all died laughing. Connie apparently didn't think it was a funny situation. He definitely remembers Jen and what her job is, even though he's only seen her a few minutes in November and December. That boy is unbelievable. Grandma even said last night at dinner that it's like he might forget that we all think he doesn't/can't say much. Out of the blue he said, "I want more milk." Now, it wasn't quite that clear, but I wasn't the only one who could understand him. Where did a complete sentence come from? The most we've heard is two words or two syllables strung together! I need to take a video of him answering questions because it is so cute the way he says, "uh huh" (his version of yes). His whole body moves in agreement and his voice gets really high pitched on the first syllable. It's a sight!

1 comment:

Kevin said...: Hello, I found your blog page through April Giesmann whom I have been chatting with about my heart baby. I am encouraged to see how well Conway is growing, especially with the removal of his NG tube! How great is that. From what I have been reading our sons have similar anatomy but are having different surgeries.

Our son, Matthew, was born on 12/18/06 with Single left ventricle, corrected TGA where his ventricles are switched, double inlet valves, Pulmonary Atresia, and VSD. He has had the BT shunt at 4 days, NG tube at 2 months, Glenn shunt at 4 months, G tube at 10 months and Pacemaker at 11 months. We are now in a holding pattern for his Fontan in 2010. His pacemaker was just far enough away that the GI doc could do the g-tube, but he would of preferred it in a different location.

Did your son just start eating on his own after some time? I have noticed that our boy is eating a little more, but not nearly enough to sustain.

We also go through first steps for speech and we have noticed that he began to talk more after we removed his NG tube. He still will only say some one or two word sentences and many signs that he has learned.

Anyhow, I wanted to say "hi" and to introduce myself We live in KC and have everything done at Children's Mercy Hospital in downtown KC.

We pray that everything goes well with your family and with Conway. If you are interested we have a carepage at carepages.com, carepage name "matthewzak".

Take care
Kevin Ringo; January 16, 2009 at 7:52 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.