Care4Conway: May as well post. . .

Wednesday, May 6, 2009

May as well post. . .

because everyone is awake and has been since 2:15am. I finally got him to sleep last night around 11:30 and the nurse came in just after 2 saying he was not settling back down. We rocked, sang, everything. He just can't get comfortable enough or relax. I hate seeing him like this. She said yesterday his respirations were in the 20's and by the evening they were in the 40's. He kicks his legs and feet constantly. Maybe Ritalin is the drug we're missing!?(haha). He wants to sit on my lap, but moves and squirms incessantly so there's no napping for either of us. Nurse Beth needed labs done on him before her shift ended so she went ahead and applied the numbing cream at 3:30 and at 4:30 he got blood drawn. Well, it was more like 5 by the time it ended because he had to get stuck 3 TIMES! She could see the vein with the red light, just couldn't get in it. We tried to distract him with an Elmo movie, but he was still pretty upset. We snuggled a little more in the chair afterward until Elmo was over and now it's 5:40 and I've put him in bed. He looks like he has no intention of sleeping. I don't get it.

3 comments:

H. James said...: Well, crap. That sounds like his heart failure is worsening again. I hope you both get some rest soon.; May 6, 2009 at 7:30 AM
L. Pappalardo said...: Ugh. Not the update I wanted to read this morning. And, on top of everything, you are running on fumes. I have no meetings set up for today and would be delighted to come up and let you nap for an hour if you need it. We'll talk later this morning. I'm hopeful that maybe, just maybe, you are both sleeping now...; May 6, 2009 at 8:18 AM
Unknown said...: Erin,
Praying this morning and hoping you are able to catch a bit of rest today.

Thinking of your Connie and all of you as you wait and watch.

(((hugs)))
Lisa in TN
and Eli; May 6, 2009 at 8:34 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.