Care4Conway: Updates

Thursday, February 5, 2009

Updates

First, I will update you on Connie and then tell you where we are pertaining to Mook. Connie went to sleep easily once he got his Monkers and got cleaned up from his bath. We didn't hear a peep from him all night. I was crossing my fingers but this morning when he woke up, it was apparent that he had thrown up in the night as his bed and head and neck and pajamas were full of dried vomit. Poor kid either was too tired to realize what happened or something, because he didn't even cry for us. He got another bath this morning and we had to wash Monkers and sheets, etc. Grandma and Grandpa came over to take care of him so Greg and I could get out the door with Mook. He had some grape gatorade. Last I heard, around 9:40, he had kept down some grape gatorade, toast and applesauce. Grandma and Grandpa were going to wait until that stayed down at least 40 minutes before trying his morning meds. I haven't talked to them again since, so hopefully things are still fine. He was getting speech therapy when I called.

Now for Miss MookieRoo. We woke her up at 6:30 so she could have some gatorade and apple juice before 7am (no food after midnight and no clear liquids after 7am). She enjoyed drinking her gatorade out of her bunny cup. Then we got out the door and got here about 20 minutes early. This hospital sure does it right, you know that? They are super organized and very friendly. We got right up to same day surgery on the sixth floor and Dr. Kane was waiting for us. He cut her long black streak of hair and gave us a baggie to save it. He went over the procedure again and really, the only fear and biggest risk is that the incision site will pull apart and widen and she'll have a scar where no hair will grow. The worst thing would be if she wanted a short haircut later in life. They will send the tissue for biopsy and he said it would be highly unlikely that it would be of any concern. She has been so good. They listened to her and again we told them about her sniffles and symptoms and they said if they rescheduled every kid with sniffles they'd never do a surgery! They checked her thoroughly and listened close to her breathing and cleared her for surgery. They were running ahead of schedule so they took her about 15 minutes or so early. They usually give a little Versed or something to take the edge off but they said she was acting so calm they would skip it with her. She let them write "yes" on the back of her head with a sharpie marker. They told us her face might be a little puffy because she'll have to be on her belly for the surgery. We played Concentration and put a Max and Ruby movie on the laptop but she wasn't too interested in watching. Pink Santa Bunny got his own ID bracelet and went with her into surgery. She looked so cute in her hospital gown and pants. The anesthesiologist let her pick out a mask for her giggle gas and they put a flavored spray on it. She chose cherry flavor for her mask. Dr. Kane expects the actual procedure to take 30 minutes or less but they have prep and recovery and such so they said they'd be finishing up around 11:00-11:15. I'll keep you posted when we hear something more. Thank you for the emails and prayers. They mean so much. Compared to what Connie's had done, this is a piece of cake, but I was worried about her and being afraid since she's older. That hasn't been the case at all and I know it is because of all the prayers.

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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.