Care4Conway: Ahhhhh!

Sunday, May 3, 2009

Ahhhhh!

I'm sure Connie feels just as good after getting cleaned up as I did after my long awaited shower this evening. Nurse Judy hooked him to a portable monitor and we carried him over to the sink to wash his hair and then he got a wipe down and smells like lavender. If Dr. Bromberg okays it tomorrow to take the leads off he may get to splash around in a little rubbermaid bucket. You should have seen him tonight when I asked him if he wanted a bath. He agreed with his whole body. I don't think he had the same thing in mind as what actually happened. He kind of freaked out having his head under the running water. Probably thought it was some new kind of torture. He cried through the whole thing but settled quickly and is now drifting off to sleep with the music of the hospital calm sounding music channel. What a big day.

He ate more crackers and drank more than a whole serving of orange juice. I can't believe with everything that's been offered to him he prefers saltines, but whatever. Dr. Samples said that kids this age have a way of self-regulating with diet and his body knows what he can handle or what he needs and is taking that in and nothing more. He wouldn't even consider eating one of those smiley faced tater tot things with ketchup.

I just can't explain the relief I feel watching him eat crackers and comment to the TV while he watches Max and Ruby.

1 comment:

Cathy Buford said...: Uncle Jim and I got the news about Conway on our drive home from Destin today and we immediately said a prayer for all of you! We got home a little while ago and I anxiously got on my computer to get an update on Connie's condition. Both of us are just as relieved as you are!!! Please know that we're thinking of you and keeping you and Conway close to our heart in our thoughts and prayers.
Love, Aunt Cathy; May 3, 2009 at 11:37 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.