Care4Conway: General Update and Swimming

Wednesday, July 20, 2011

General Update and Swimming

Just wanted to pop on and tell everyone that Connie is doing well. It's been a little over a month since the last update so I thought I'd pass on a few new things about him.

He is tolerating the heat far better than he ever has in the past. Everytime we're out and about I think to myself how "we couldn't have brought him to this last year" or "how miserable he was last year at this".

We took him on his first "train" ride recently to Union Station via the MetroLink. We ate lunch at the Hard Rock Cafe and fed the fish. He loved it!

July 4th has come and gone and even though the parade was a little rainy, he had fun for most of it. Patience is not his strongest skill and there was a lot of waiting. Waiting for the floats and candy. Waiting for the fireworks to start. This year he was also brave enough for the rides at the carnival AND the fireworks. He was very disappointed that he didn't meet the height requirements for most of the more thrilling rides so I've convinced him that certain foods (fruits and vegetables) will help him grow bigger so that he can ride them soon.

Connie has developed a passion for the water. Last summer he would barely let go of the sides of the pool and never even think about putting his head in the water. This year he is jumping off the side and going under. He can even jump in and swim under water across the pool! His favorite thing to do in the pool is to have Greg throw him in. He's so fun to watch. We went to Raging Rivers earlier in the week and he even did the water slides. His favorite activity there was the giant wave pool.

It seems like summer is already winding down, unfortunately. We got a postcard in the mail from his preschool and he'll be attending on M, W and Th mornings. He's all set with his James (from Thomas the Tank Engine) backpack and he chose a green binder to be his portfolio. We put a Thomas cover on the binder and he's excited to ride the school bus again.

Soccer has kind of come to a stand still. The last two weeks have been cancelled due to the high heat so hopefully it'll cool down here enough soon that he can get back out there. Practices for his fall team at Assumption will likely begin after Aug. 1.

3 comments:

Anonymous said...: Can't wait to hear how Connie's first day went! Hope your first day at preschool went well also Erin!
Kate Becker; August 15, 2011 at 7:50 PM
Anonymous said...: Erin,
We came across your site while searching for info about heart defects -- Conway is so cute!! I've enjoyed reading your blog and hearing you story. We have a 3 month old, Koal, who was born with cTGA, pulmonary atresia, VSD, ASD and some other issues -- so many similarities to Conway! We are in the process of making decisions about our next steps for surgery, as our children's hospital here in Kansas City doesn't perfom the Senning-Rastelli needed. I would LOVE to be in contact with you more about your time in Ann Arbor and your journey thus far. Our blog for Koalton is:
koalsheart.blogspot.com

Hopefully we can be in touch more soon! Hope all is well :)

God bless you,
Kerry Schieber
KC, MO; August 23, 2011 at 8:59 AM
The Schiebers said...: Hey Erin,

We found your blog while searching for information on certain heart defects. Conway is SO cute, and we've enjoyed reading through your blog and hearing your story. Our 3 month old, Koal, was born with ccTGA, pumonary atresia, a VSD, ASD and some other issues, and had his first open heart surgery at one week old. He is doing well now, but we are in the process of making decisions about his next surgery. We've been told our best option is the Senning-Rastelli (or a modified version of sorts) and that Michigan or Boston is where we would need to travel. We live in Kansas City, and would love to be in contact with your more about your time in Ann Arbor and preparing for surgery, etc. Our blog for Koalton is:
koalsheart.blogspot.com

Please check it out...sounds like Koal and Conway have a lot of similarities with their little hearts :) Hope all is well there. Look forward to hearing from you!

Kerry Schieber
Kansas City, MO; August 24, 2011 at 1:12 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.