Care4Conway: More Progress

Wednesday, April 23, 2008

More Progress

Today was a busy day, Connie-wise. First, we started the morning with a visit from our parents as teachers parent educator, Jennifer. She spent the hour watching Connie play. She brought things for typical 13-14 month olds and he did great! She even brought some activities that she normally reserves for 15-16 month olds and he was able to do those as well! Hooray! Then we made our way back down to Children's for his 6 month follow-up with the neurologist. Can you believe it's been six months? The doctor was very pleased with his progress and also very happy to hear he's had no more seizures or other major health events since he saw us last. He did say that Connie's lack of eating and talking is a concern, and that if, by our next checkup, they do not see marked improvement in these areas, they will recommend stepping up the therapy visits for sure. We are so thankful that he's just a normal little boy in almost every way. We know that God heard everyone's prayers and is answering in His time.

The big news is Connie can crawl! Last night he woke up at 10pm and just had to show off. We ended up playing with him until quarter to twelve because he was just so full of energy and enthusiasm over his new skill. Greg was laying on the floor eating a bowl of cereal and Connie wanted to see what that was all about so he went from sitting to all fours and took four to five "crawls" forward. He does seem to have some confusion about moving that second leg to catch up with the first, but I'm sure with more practice he'll nail it. One other time today he made the attempt to get somewhere, but for the most part, he's getting to all fours and lunging forward and "talking" excitedly and then goes back to sitting. Silly boy. He can also pull himself to standing if you hold his elbows. He's now mastering the art of wrestling on the floor. I get down and play airplane with the kids and when it's Mookie's turn I sit him next to me on the floor and while I've go her in midair, he pounces! He doesn't fight fair, either. He goes right for the face and you can't get away because he's got a fistful of hair!

Thank goodness the dietician is coming on Friday because today at the doctor his weight was 24 lbs 6.5 oz! That is an ounce and a half shy of a one pound gain since last week! We've been adjusting his feeds, but keeping the same caloric intake so I'm not sure what's going on. All I know is he's starting to pork out a bit!

1 comment:

Stacie said...: Hooray for Conway! It put a big smile on my face to hear all his great news (Kennedy goes into the same "attack mode" as Conway when I'm playing airplane with her big brothers too). He is a remarkable little boy. :o)

Stacie Kuhlman; April 24, 2008 at 2:59 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.