Care4Conway: Mid Day (Friday)

Friday, June 19, 2009

Mid Day (Friday)

Eating Doritos-yum!

Cheesy lips

Watching "Melmo" (Elmo) while he eats doritos

Watching TV and playing with Daddy's iPod--he's got it so rough!

Doing his favorite thing in the hospital, pushing buttons on the bed!

We are still here (surprise! not!). Connie's roommate got sent home just in time for him to take an afternoon nap. Poor thing was inconsolable all morning. Her mommy tried everything, but to no avail. To make matters worse, he wasn't allowed to venture outside of the room b/c the portable telemetry devices weren't working properly! He didn't seem too bothered by her crying, but was definitely at the peak of boredom. We asked the nurse to have Child Life bring us something new to do and we got infant toys that you press a button and a thing pops up. I was hoping more like a truck he could push around, but oh well. He did name the animals that popped up and even tried to feed the frog some of his raisins at lunch. That was pretty cute. He didn't eat much breakfast or lunch, but he did have one good diaper and drank 3/4 of a sippy cup full of diet soda (I'm desparate at this point!). His IV was not flushing so we got that pulled too. Now he's just on the monitor. They are watching his intake closely though so if he doesn't start drinking a bit more, he may get a new IV tomorrow so they can deliver some fluids. We kept harping about getting out for a walk so after lunch we finally got to tour around on 7. I'd say the highlight of his day has been pushing the automatic door button on the wall. He goes right up to it and bounces around like he can't contain his excitement. It's hilarious. We took some hot wheels out in the hall and pushed them back and forth for a bit and then he got a 12 lead EKG. They said they'll be doing it daily while he's on an amiodarone load but this is the first day for it. They drew blood late this morning for his INR level and to get a baseline on his thyroid. This is so they will have something to compare it to in a couple of months when they check it again to monitor whether or not the amio is negatively impacting it.

I look for him to sleep until 4 (cross your fingers!) and then maybe we'll walk around some more before dinner. Greg is bringing the girls up around 6:30 so that will be fun for him.

1 comment:

Shari said...: I haven't commented in a long time, but have been praying for Connie for a long time. He has grown and looks like a little boy and not a baby anymore! Thank you for the privilege to read this and pray for your precious son.; June 19, 2009 at 4:44 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.