Care4Conway: 5/31/09

Wednesday, June 3, 2009

What have we now. . .?

If there was any doubt in our minds that Connie's recent behavior was not related to being two, that is gone after today. We had a few pretty decent nights and then last night he cried for 10 min. at bedtime, woke up at 1am and woke up at 3am crying. No, not crying--screaming. I've read about night terrors and I don't think that is it at all. It is that he wants to be with us, pure and simple. He's not getting his way when he has to go to bed and be away from us. It has carried over into daytime behavior a tad bit as well now too. Today Ms. Deb came for PT. He's been excited about her coming and anytime we even mention her name in our house, he starts showing off all his physical/gross motor abilities. After about 1/2 way through the session today, while he was showing all the wonderful things he can do, I stupidly thought how cute it would be to let him show off how well he plays learning games on the iPod. He showed her how he operates it and then when it was time to work on the next skill (standing on one leg), he freaked out and threw a major tantrum. He was mad that we took the iPod away. We even tried showing him that if he did the new skill once he'd get it back but he wouldn't even attempt it. We had Mookie do the skill and get the iPod as a reward and then we each took a turn. When it was his turn he just screamed louder! Deb tried coaxing him to do another skill (smashing paper cups with one foot) but that was unsuccessful too. He carried on for a good 10 minutes at least probably before crawling into my lap and putting his head on my shoulder. Ms. Deb asked him if he was just done and he said "Uh huh!" We talked for a minute about how it felt better to be calm and happy instead of screaming and mad and he all of a sudden got up and started smashing cups. I don't know if his short term memory just "forgot" about the iPod or what, but he seemed to be over it and cooperated the rest of the time. What a stinkerpot!!!

One funny note to add: Greg has been trying to get that boy to say "Daddy" for about a year now. Everytime he learns a new word or we are practicing words with him, Greg requests for him to "Say Daddy" and all we ever get in response is a laugh or a throaty sound he makes when he thinks he's being funny. Well lately, he's been saying "Greg". It must be my fault, for hollering from the floor I'm on to Greg (on a different floor). We were at my parent's house and someone said something about "Where's Daddy?" and Connie suddenly started walking around yelling, "Graaaaiiiiigggg". Then the next morning, we woke up to the sound of him standing at the gate at the top of the steps yelling down to us, "Graaaaaiiiiiig". Greg told him he didn't know they were on a first name basis!

Sunday, May 31, 2009

A Busy Weekend

Connie is resting great now! We had a busy weekend celebrating as Great Grandma O'Leary turned 95, Cousin Jack turned 6 and Cousin Gabby graduated from the 8th Grade.

We ran Connie's insomnia by Dr. Bromberg, just to make sure it wasn't caused by a med he's on or that we're missing something related to his cardiac function. Dr. Bromberg thinks he's just being a stinkerpot and said to make sure he gets plenty of fresh air during the day and suggested we take him swimming to wear him out and cut naps short if need be to make sure he's good and worn out at the end of the day. Well today it worked! Although I don't think he was quite ready to be done partying because he ended up going into the girls' room and crawling up into the bottom bunk and falling asleep!

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.