Care4Conway: Backsliding

Tuesday, May 5, 2009

Backsliding

I left the PICU for a bit to see if me leaving the room would help him fall asleep and realize it was not time to play. When I came back in to check on him I ran into Dr. Bromberg. He asked how he was and I told him he seemed restless and told him about the two bouts of diarrhea he's had tonight and the rash spreading on his chest and trunk. I also mentioned that his breathing seems more like what he sounded like when we came to the hospital and that he's coughing and sounds a little wet when he's laying down flat. He followed me in the room and sure enough, little man wasn't asleep yet. Dr. Bromberg said he thinks he's backsliding. His feet are cold, his liver is bigger and his lungs sound wet. He's putting him back on the Milrinone tonight and going to rethink tonight about the timing for the cardioversion and make a decision. He doesn't want him on the milrinone much longer because he said it's not very good for the heart either.

So, back to square one.

Hopefully once the meds are restarted, he'll get some sleep. . .and momma too.

Say an extra prayer tonight for wisdom for Dr. Bromberg. This decision is a big one.

2 comments:

Aaron and Erica said...: My name is Erica and I found your blog from the L-TGA yahoo group (I haven't even introduced myself over there yet). I wanted you to know that I will be praying for Conway and the Dr.'s caring for him. I'm learning so much from your blog. We recently brought home our daughter from China and she has L-TGA. She had OHS to close her VSD and fix a cleft in her mitral valve 6 weeks after we got home (in March of this year).

Praying for you in Alabama...

Erica

http://prayingforyouyou.blogspot.com; May 5, 2009 at 11:05 PM
Staci Budde said...: Hey guys!
Im so sorry you are having to deal with all of this!! I would love to bring dinner or come sit with you or anything you might need! ANYTHING!! We are fervently praying for Connie and all of your family!!

Love,
Staci Budde
314-277-9018 call ANYTIME!!; May 5, 2009 at 11:16 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.