Care4Conway: Itchy and Getting Sore, But Moving Forward

Saturday, August 29, 2009

Itchy and Getting Sore, But Moving Forward

Connie is still itching and scratching, despite the benadryl. Good news is he's not needed anything other than tylenol and his morphine drip is down to 20. Tomorrow it will go to 10. Hopefully getting less of it will improve the itching. He got a bath and even got his hair washed!!!! and after that I got to hold him. He fell sound asleep and we went to move him back to bed. That woke him up and all the jostling around got him pretty sore around his chest tubes. He laid back down and avoided needing any PRN IV morphine. He's since gotten up once to eat a few more bites and drink a few sips. He's getting sleepy again and we're hoping for a restful night since it will probably be our last night in the ICU.

7 comments:

Unknown said...: So happy things are going well for Connie. We are praying that he continues to make baby steps in the right direction. We are praying that you all get to come home very soon.

Heart Hugs,
Nicole mom of Lorelei HLHS; August 29, 2009 at 9:49 PM
H. James said...: That photo is just where Connie should be right now, in Mama's lap. Thanks for all the updates, as always. Congratulations on the pending graduation from ICU!!; August 29, 2009 at 9:51 PM
Anonymous said...: It is wonderful to see Connie in your arms, where he belongs. You look pretty happy, Erin! Thanks for the frequent updates...we really are eagerly looking for Connie's progress. Praise God--and we will keep on praying. Sr J; August 29, 2009 at 9:53 PM
Lisa P said...: Ohhhh I love seeing him cuddling with you! Seems like he's improving by leaps and bounds! I so hope you guys have a great night.

Peaceful dreams!

Lisa P.; August 29, 2009 at 10:16 PM
Grandpageorge said...: Great news. We will be praying while he is in the OR; August 30, 2009 at 8:37 AM
Anonymous said...: HI I HOPE THAT EVERYTHING GOES WELL WITH YOUR SON. I KNOW WHAT U ARE GOING TREW , MY SON HAS HETEROTAXY AND POLYSPLENIA SYNDROM A VSD AND PDA. JUST HAVE FAITH IN GOD.. I HAVE A MYSPACE ACCOUNT IF U WOULD LIKE TO TALK d.dario2007@yahoo.com, take care and dont worry he is going to be ok .; October 9, 2009 at 5:47 PM
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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.