Care4Conway: Sleep at Last!

Monday, November 5, 2007

Sleep at Last!

Connie got a lot more sleep last night. The trickle down effect was that we did too!He went to bed a little before 8p. He woke up at 11p, 1a, 2a, 4a and 5:30. Two of those times he threw up (one required a change of clothes/sheets) but then he went back to sleep easily. The other times he needed new pants. I'm always shocked when he has poop because I've never heard of a kid pooping in the middle of the night, but then again, most kids aren't eating all night long like him! That's when most of his calories are consumed so it makes sense that that's when he'd need to eliminate.

As I type he just had a huge vomiting spell. At least the tube didn't come up.
Thanks for checking in.

2 comments:

Anonymous said...: Erin,
This is quite a site! Thanks for the updates. We will as always, continue to pray for Connie's continual forward progress, especially in the area of oral stimulation. He really has come so far, and although we'd all like his progress to move faster, it's all in God's Hands, and in His time. Patience is a virtue, and one I know I need continual work at!

What exciting news that MK pooped in the potty. I'd been meaning to ask you if you'd started potty training, it sounds like it's going well. Claire's new trick is that she understands when we say diaper change, bath and eat, she goes to the appropriate location. It's pretty cute.

I hope you have a great week, we're starting to see the typical fall like weather, coats and sweaters here we come.

Love, Caryn; November 5, 2007 at 7:54 AM
Anonymous said...: Hello Erin!
I've been following Connie since the day before surgery. I don't even remember where I first heard of Connie, but I've been checking in on him everyday since then. We live in Arizona, and even on a week-long trip to NY, I kept up with him!
The new site is great! I will continue to pray for Connie every single day. From where you've come until now, he is doing wonderful! Even on the days that it feels like a step backwards, keep holding strong! I absolutely LOVE the videos that you've posted so far! It's great to put a squirmy little boys face to all of these words.
God Bless You and your family!

Angela in Arizona; November 5, 2007 at 11:02 AM

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.