Care4Conway: Stationary No More!

Saturday, April 26, 2008

Stationary No More!

Connie is officially on the move. Last night he made his way from in front of the coffee table to in front of the love seat (about five feet away) and pulled himself up on my leg. He did it before I even realized what he was doing. Greg and I were talking and I looked down and he was standing up and holding on to my leg. He has fallen off of our bed (it didn't phase him) and seems afraid of nothing. Deb, the PT, said that is one thing that impresses her about him, that he's not afraid and that he's willing to try any new skill. We figured out how to adjust the wheels on his walk-behind toy so that doesn't roll quite so easily and he now can stand at it and take a couple of steps without us holding on to the toy! Today was our first day trying the 50/50 blend of formula and breastmilk and he threw up the first two attempts. I started to get bummed, thinking we were going to have to go back, but the next two he did fine and didn't even flinch. I think that the problem is we went from 220ml's two weeks ago to 205 mls last week (we could go down on volume and get the same total calories/feed since we were introducing a more caloric fluid)and then up to 230 mls this week. We want him to be at 250 mls by the time he gets to 100% new formula so that would be 230 this week, 240 next week and then 250! So, it's hard to tell if he was struggling with the increased volume, the concentration, or neither. Since he kept the last two feeds down we'll continue with this plan tomorrow and see how he does. Hopefully he does as well as he has with the past adjustments.

Connie's cousin, Liam, came over today. After their afternoon naps they played outside together until it got cool. Inside, Connie was very good about sharing and showing his younger cousin how to shoot hoops and bang toys together. He needs a little practice being gentle. He gave Liam "love pats" with about the same level of force that he does the dog (i.e, too hard!). Here are a couple pics of the boys hanging out under the swingset and Connie with his walking toy and Grandma Marybelle. Enjoy!

We are so thankful and pleased with the progress Connie is making. It is so hard to believe that 8 months ago exactly I was packing for our trip to Michigan and the start of this whole ordeal. What an amazing journey it has been! I've learned so much about myself, God and even medical terms I wish I didn't know. God has also shown Himself to me through so many of you and many others out there who don't even realize how they've touched us. We are so blessed. I want to remember this feeling for a long time. Hopefully I'll remember it the next time a challenging situation presents itself :)

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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.