Care4Conway: Crossing Fingers

Monday, February 1, 2010

Crossing Fingers

Just when we thought we had turned a corner with Connie and his lingering cough (started Zyrtec and Singulair 6 days ago) he woke up last night around 3:30. Not for a wet diaper but to cry out that his "head hurt". He's complained every single day since his pacemaker was changed that his head hurts but usually only says it once and then goes about his business. We were hoping it might be a side effect of the mono hanging on and planned to wait it out a couple more weeks to give the new pacer settings a chance to improve his LV function. Most often, the complaint about the headache comes right after rising-in the morning and after nap. Last night it was literally preventing him from going back to sleep so we brought him to our bed around 3:30. He continued to complain and moan about it even after a dose of ibuprofen and around 5am he vomited up the med. We'd like this to just be nothing, but know in the back of our minds that this could be heart related. Right now he's still sleeping, presumably because he was up so much last night. We'll see how the day goes and keep everyone posted. Please say some prayers today that we can all get over these winter bugs, stay healthy and for his heart to be okay.

7 comments:

Aaron and Erica said...: I'll be praying...; February 1, 2010 at 8:39 AM
Lisa P said...: Hang in there and keep me posted...will be thinking about you all day!; February 1, 2010 at 8:44 AM
Lisa P said...: hang in there - I'll be thinking about you all day! Keep me posted!; February 1, 2010 at 8:45 AM
H. James said...: Oh, I'm so sorry Connie (and you all) had such a rough night. Hopefully it is just some residual effects of the mono and nothing heart related, but I know it's an awful feeling to be worried about a real possibility. You are in our thoughts today.; February 1, 2010 at 9:36 AM
H. James said...: Oh, I'm so sorry Connie (and you all) had such a rough night. Hopefully this will turn out to be nothing more than some residual effects of the mono, but I know how awful it is to worry about it being something heart related when that is a real possibility. You are in my thoughts.; February 1, 2010 at 9:38 AM
Unknown said...: Erin,

I was thinking about you yesterday and wondering how Conway was doing. I'll be praying for answers, preferrably answers that are not heart related!

Hang in there~
Lisa in TN
Eli's mom!; February 1, 2010 at 1:21 PM
Samantha said...: Our prayers are with you today and always... Just a thought, could his headaches be sinus related, I know Emma complains of her head sometimes and the Dr told us that it was sinus pressure and when she would get up and down it was worse due to stuff moving around... I pray for your family and for Connie to feel better soon, keep us posted on how he is doing...; February 3, 2010 at 1:56 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.