Care4Conway: Take 2

Monday, May 4, 2009

Take 2

Well, he never fell asleep at 8. He acted again like he needed to poop but was having trouble. It's so hard to get the timing right on everything. We wanted to give him a suppository, but then we don't want him to poop on the cotton balls in his diaper that he hasn't peed on yet. They want to collect the pee (doesn't have to be sterile) to do cultures. No fever or anything, just standard. So, we have to wait for the suppository. Then he was due for his digoxin but she's afraid to give it and then do his needle stick because we don't want him to throw it up. He was acting tired again so I said let's just go ahead and do the stick and then give the dig and then let him sleep. So that's what we did. We sat him up and hung his leg over the side of the bed and she got blood pretty easily from his toe. He cried, but not constantly and not as hard as the times in the past. I think he likes Nurse Molly:) He was so brave he got a basketball sticker and stuck it right on his gown. Now he's watching an Elmo video in bed and thinking about a nap.

2 comments:

H. James said...: Caught up again. I'm at work, so I can't watch the video. My heart is just breaking for you & Connie. It is SOOOO hard to watch our little kiddos suffer and be unable to do much to relieve them.
I am glad he seems to be feeling better and I hope that after so much trouble, you get good results from the labs!
We'll be keepig tabs on you from Wisconsin & hope for good news!; May 4, 2009 at 10:11 AM
Unknown said...: Erin,

I haven't been checking in on my blog faves lately and missed all this! I'm so sorry you are going through this. I hope you can avoid the Amiodarone, but if you can't, it's not too bad. Eli took 100-200 mg (pretty hefty dose!)from 6 months old until last October at nearly 3 yrs old without any problems. We did have to go have his eyes checked and labs for liver and thyroid regularly.

Anyway, praying for you all~; May 4, 2009 at 10:45 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.