Care4Conway: Preschool and Grandpa Updates

Tuesday, March 31, 2009

Preschool and Grandpa Updates

Connie went to his first day on Monday. Parents were asked to stay the whole time, but were only in the room for the first hour. Then they had an orientation without the kids and then could stay behind the observation window the rest of the time.
Here are Greg's notes from the morning:
1st hour played with Connie with students present. Next 45 minutes orientation away from kids. Connie cried whole time. Is now engaged and playing well. There is a two way mirror for us to watch. This is going to be great for socializing Connie. I am a bit concerned as Conway seems MUCH younger than the others. I'll ask teacher what to do if he poops, and to make sure Connie won't be too much of a burden for them. Oh God, they just gave the kids glasses of water. Goldfish forthcoming. He's SO cute sitting at the table eating with the other kids. Oh no, it's not water. He's getting OJ. Drinking it fine. He loves it! I can't believe he's actually sitting calmly there in a chair eating snacks with other kids.
35 minutes left. Still eating goldfish. Another kid's having a tantrum. But not my little boy!
Connie was just taught to clean up his snack and throw away the leftovers.
He's off to play. Looking right at home.
Conway 's table is getting a puppet show.
15 minutes left, connie's crying at the door. Just got comforted and seems to have settled down.
As you can see, it was a busy morning for the both of them. When they got home, they had lunch and everyone took a two hour nap!

Greg said that it was heartbreaking watching him walk around signing for a drink and not getting one. I just about died because I had emailed the teacher with a list of his signs and what they mean. Here I am being over protective and thinking that maybe he's thirstier than most kids because of his heart or something and he should be able to have a drink whenever he wants one. Greg said it wasn't too long before they had the snack and gave the kids a drink anyway so it's not going to kill him to wait a bit. He drank out of a big boy cup with no lid and had no problems. We decided that at mealtimes at home we would get rid of the lids on his cups and let him drink like a big boy. He did great at lunch and dinner! He was so fascinated with the cup at dinner that I refilled his 1/2 glass of milk six times! He barely ate because he was so 'busy' practicing his new skill! Did you ever think you'd see the day?!

As for Grandpa, he's been moved out of ICU and is in the step-down (moderate care) unit. They did a repeat CT scan and the bleeding has stopped, but the blood is still on the brain and has not resorbed yet. There was talk about him coming home yesterday, but after the scan they decided not to. To make matters worse, they x-rayed his shoulder because he's been having so much pain since the fall (that's where he tried to catch himself) and turns out it is fractured! Late yesterday afternoon he was waiting on a consult from Dr. Koehane, an orthopedic surgeon. Please continue to pray for him. He is in good spirits and feels pretty good except the shoulder is bothering him quite a bit.

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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.