Care4Conway: Believe it or not, he's sick again!

Sunday, June 15, 2008

Believe it or not, he's sick again!

Friday evening Connie had a very hard time going to bed. He has been struggling with sleep ever since he learned to crawl and eat, but this was different. He could not stay asleep and was breathing extremely fast (almost panting). And it wasn't as if it was breathing fast after crying. He wasn't even crying. His heart seemed to be pounding in his chest like he'd just been working out. At 1 am he woke up and stayed up. Around 4:30 this was still going on and I got Greg up to see what he thought of it. We decided to call the cardiologist's exchange and it turns out Dr. Bromberg, our doctor, was on call. I felt bad calling so early, but I was concerned that Connie might be having rhythm issues with his heart. He told us to take him to the ER thinking he might be in Atrial Flutter. The good news about having a pacemaker is that his rate can't go too high. The problem is that he could be in atrial flutter a long time and it go undetected because of the pacemaker not letting his rate go so high. They hooked him up to the telemetry and did an EKG, which looked "funny" but they weren't sure how his were supposed to look. They sent it to Dr. Bromberg who decided to come in himself and take a look. He got a chest x-ray which actually looked better than the last time we were there. We had the same doc in the ER that admitted him a few weeks ago. Dr. Bromberg brought the Medtronic thing a ma jig and interrogated Connie's pacemaker. He could tell from that that Connie was not in Atrial Flutter (thank God!) and that from a cardiac standpoint he was fine. His heart rate had gone back down to normal by this point so he told the ER doc that who then decided to discharge us. They labeled it an "upper respiratory virus" even though he had no symptoms except the breathing fast and we went home. We got home about 9:30 or so and I tried to feed him but he wouldn't eat. He took a good nap (probably since he'd been up all night!) and wasn't really interested in lunch when he woke. The afternoon nap turned into a huge battle and he was burning up. We took his temp and the thermometer shot straight up to 102 degrees and got there quickly. I gave him some tylenol and called the pediatrician. The doctor on call was someone I've never heard of and is not in our ped's practice, but I told her the story of the past 24 hours and even the hospital admit from a few weeks ago along with some background on his cardiac diagnosis. Once she heard he had a fever she said, "That explains it!" It's another virus. Give him tylenol or motrin and let him eat whatever he will eat. What?! We keep him inside all winter for fear he'll get sick and now the weather is warm and there aren't supposed to be so many germs out there and he's gotten sick back-to-back. He had a slight fever this morning but with motrin has been somewhat himself. His appetite is not great and he's not drinking much, but he also doesn't have vomiting or diarrhea like last time. I'm hoping he'll eat more and more each day and avoid dehydration. Last time, he got rather "dry" and came pretty close to being admitted for IV fluids. Please pray that he'll continue to feel better and eat more and avoid any further illnesses this season. I'm sure part of the problem is he's been exposed to so little because of staying home all winter, but what can you do?

So, that's our news. Oh, I almost forgot to add. I think they think some of the trouble he was having with getting comfortable and sleeping was because we've reduced his prevacid for reflux so they called Dr. Brady and she said to up it back to where it was. Now that he's had the fever and we know something different was going on I think it's safe to go back down, but we'll wait till he's feeling and eating better and then give her a call to see what she says.

1 comment:

Stacie said...: I'm so sorry that you are having such a hard time keeping the bugs away. I'm hoping he starts feeling better soon. :)

Stacie- Texas; June 16, 2008 at 3:30 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.