Care4Conway: Bedtime Update/Dosing Change

Wednesday, July 22, 2009

Bedtime Update/Dosing Change

We got right back into our routine of Connie going to sleep on his own. He did great for his nap and bedtime tonight. That's a huge relief. Can't stand the tears knowing he might not feel 100%.

Dr. Bromberg emailed me this evening to make one dosing change on the amio. For the next five days, he's going to get twice his current dose, to try to get it in his system more quickly (trying to ward off a relapse). After that, we'll go to the 20cc's, up from the current 12.9cc's. Also, he said that one thyroid test from today was out of the normal range and the other one was still pending at the lab. He's going to talk to an endocrinologist and possibly start supplementing him with a thyroid medication. Ugh. Also, I had reminded him this morning that he had said he wanted to follow the BNP level in Connie so as long as he was getting labs, he said to go ahead and add that to the list. That level is the one that detects/rates the amount of heart failure. Remember back in May when he had it done and "normal" is less than 100, severe heart failure is 900 and his May level was 7000! Today's level was over 7000 again. Unfortunate, and definitely a bit concerning, but he doesn't really know what to think of that number because we knew he was in flutter with impending clinical signs of failure anyway. Research that says what the numbers mean are done on adults anyway, not kids with CHD. Still, we have a record of it and can follow it. I think last month when he was in Children's the number was only around 800 and he was clinically doing worse. He was vomiting then and his liver was bigger. So, see? Who really knows what to make of it?!

We're calling on Friday to find out more about the thyroid thing.

Thanks again for praying. God is an awesome God and we continue to trust that He knows best.

4 comments:

Marsia Ek said...: Hey Erin, you guys stay busy. I always pray for Connie. His origional prayer picture you sent is always on our fridge. Keep up the great work you do. Keep fighting Connie. Love, Marsia Ek; July 22, 2009 at 11:09 PM
Annie Whitelaw said...: I am happy that the stressful day is over with and that Conway is doing well. I am still praying everyday for all of you.; July 23, 2009 at 1:34 AM
miareese said...: Love and hugs to you all!! Erin they should hire you, you are amazing! Connie is always in my prayers..; July 23, 2009 at 7:48 AM
stove said...: We're praying for and thinking of Conway here in Michigan. We're hoping he can avoid another surgery.

Heart hugs,

Steph and Lily (L-TGA group); July 23, 2009 at 1:33 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.