Care4Conway: 3/4/12

Thursday, March 8, 2012

Back to Normal

Connie stayed home yesterday and was pretty close to normal. He ended up getting one dose of ibuprofen around lunch and looked a little blotchy faced all day but other than that was himself. Today he went to school and has been eating his normal diet of hot sauce, jalapenos and ice water! We follow up with the oral surgeon in three weeks. Thanks again for the thoughts and prayers!

Tuesday, March 6, 2012

We're home

First, you need to read the next post, then jump back up here.

We arrived home at about 6:40pm after his 30 min. surgery. You know our Connie, he does nothing by the book. Right after they brought us the discharge papers to sign just before 3pm, he got lethargic and limp and wouldn't respond to his name. He had been up, alert, talkative and happily drinking slushies for an hour and then this happened. It was alarming for sure. The nurse happened to be in the room when it took place because we had just called for help with getting him up for the bathroom (still had IV). She was calm, but immediately called for a doctor, which got me a little worried. His anesthesiologist was right outside the door and came in to observe. They hooked him back up and checked his vitals, which were normal. He just could not maintain any level of alertness. I later described the episode to cardiology and they think it could have been a vasovagal syncope type of thing (brief fainting spell). He took a decent nap afterward and then once we were discharged, we headed straight for the hospital cafeteria, where he'd been begging to go all day. All he was allowed was soft foods but he's not crazy about puddings and such. We let him get some salami and juice and sat down to enjoy. Moments later he vomited all three slushies! On the way home he got sick again and did so again following his bath. We gave him half a percocet at bedtime in hopes that when his local wears off he won't hurt too badly. He'll stay home tomorrow, mainly so we can make sure some food stays down. If he's doing well he'll go back to school on Thurs.

Thank you for your prayers today! They mean a lot.

Surgery Day

Conway's oral surgeon just came back and said all went well. He was able to save the front baby teeth and work around them so that's great. He gave us the tooth he pulled out so Conway can get a visit from the Tooth Fairy tonight! We will go back for a follow up in three weeks. He said there will be some swelling and soreness, but they will numb it which should last until bedtime and then he can have some percocet tonight to help him sleep. This was the first procedure he's had (and he's had many) where he's been scared beforehand. He was scared mainly of the mask they use to give the gas. This puzzles me since he uses a mask at home for his nebulizer breathing treatments. He wanted us to go back with him and some hospitals allow that, but not Mercy :( he did get Versed beforehand and it did knock him for a loop, but it didn't make him silly and goofy like it's done in the past. There was definitely still a somber mood in the room. Now I just hope and pray he won't need anything else medical for a good, long while. Thanks for the prayers. We'll keep you posted after we get to see him.

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.