Care4Conway: Here Comes Our Boy

Monday, August 31, 2009

Here Comes Our Boy

The Connie that we knew and love is definitely making a comeback! He woke up at 2:30 this morning (thanks to his neighbor) and was doing his tricks like fake sneezing and trying to be funny. He would poke himself in the head and then laugh. He almost got a little "wild".

I asked the nurse about turning off the morphine drip (since that was the plan anyway, and since he seems more ready to get up and about, it needs to get out of his system) and she said she won't. She doesn't have orders so she won't do it. But, she will give lasix at 6am when he just had a dose at 9pm and still hasn't stopped having soaker diapers! I told her I was going to hold that 6am dose for two reasons. One is I am not getting him up at 6am to give him meds everyday once we are home. I think it is about time they get these drugs on a schedule that makes sense. The other is that less than 12 hours ago he had it and has reacted quite strongly to it if he continues to pee and pee and pee. I want to ask the NP or the docs during rounds about either decreasing the dose or going to once a day. At home, when his heart wasnt' working as well as it is now, he only took it once a day and it was a smaller dose than what he's on here. We'll figure it out, it just seems insane to me that when you get this close to home that they don't start timing things better.

3 comments:

H. James said...: Go MommaBear!
I am so glad Connie is getting back to his old self again. Hopefully you will be discharged home soon and can get back to your own routine, without any "neighborly" crying to interfere! I am so very happy things are going well.; August 31, 2009 at 6:16 AM
Yvonne said...: I am in complete agreement!! And glad to hear your silly man is back; August 31, 2009 at 7:40 AM
Unknown said...: Agreeing here, too!
I know they have to follow doctor's orders, but you would think a little common sense would be involved.

Sounds like you won't be there much longer anyway. Go Connie, go!; August 31, 2009 at 7:47 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.