Care4Conway: 12/23/07

Friday, December 28, 2007

Finally!!

Connie's nurse came to the house this morning weigh him and he finally broke the 21 lb mark! His weight today was 21 lbs. 5.5 oz. That's a 9 oz. gain in one week! He had been up to 21 and then lost and stayed between 20 lbs. 7 oz and 20 lbs. 15 oz for over a month but finally he's gaining again. I guess either he ate a few too many Christmas cookies or maybe I did and my milk was higher calories than normal (ha ha)! Yesterday the OT was so impressed to hear that he loved whip cream and even took it eagerly from a spoon as well as fed himself (put to his mouth and tasted) some orange jello salad, cranberry salad and potato casserole. He performed his whip cream tasting for her during her visit. She tried to expand his palatte (sp?) by offering him some sour tastes. We started with pickle juice and he responded by vomiting so much that it even came out his nose. Poor fellow. He had been doing so well and apparently was not in the mood for sour tastes. Maybe someday!

He continues to get stronger physically and has totally mastered sitting without support. He was reintroduced last Friday to the exersaucer and has been tolerating increasingly longer periods in it ever since. I think yesterday he was in for about an hour just rocking, bouncing and watching his sisters bounce on their new trampoline. When you are holding him he loves to bounce (we call it dancing) or rock. His new trick, one in which he was perfecting last night from 10:30-12, is where he makes himself free-fall backwards and you catch him and help him pull back up only to do it again over and over. He laughs hysterically the entire time. I can't wait for someone to take a video of him doing it. That game shows me that he is gaining trunk strength bigtime.

The dietician, Jenni, came today and we set the goal to increase him another 10mL per bolus feed in a month if he continues to tolerate the 160 feeds. If that happens, we can start backing down on his overnight feeds with the hope that eventually he will be like a "normal" kid and just eat during awake times. This would also allow him to be hungrier during the day and have more motivation to eat orally.

As you can see, we've been busy learning, relearning and loving this year. We hope that 2008 brings about continued improvement and more miracles of recovery for Connie and we pray that you all find the new year to be full of hope and health as well.

Tuesday, December 25, 2007

Merry Christmas!

We've had a busy time these last few days, but then, who hasn't? Connie has been to four Christmas parties (three have been family parties) and has done so well adjusting to being out of the house and held by others. I feared that being with me so much he'd be particularly strange around new faces but that hasn't been the case at all. He loves smiling at all the extended family. Starting on evening of the 21st, he began throwing up again and by yesterday he was throwing up all feeds except the continuous overnight. He threw up his tube on the way to Christmas Eve and I had to pull over and replace it on Hwy 270! So much for that Christmas outfit. When we got to Terri's he had to put his pj's on and we didn't get to show off his pretty clothes:( Then Mookie spilled her drink on her dress and was cold and wet, I spilled Connie's milk before pouring it in his pump and then about half way through he started fussing like crazy. We called it a night before 8pm! Mary Kathleen won't walk anywhere on her own anymore (perhaps jealousy that he gets carried) so that made for a lot of fun. Then on the way home he threw up again. That's when I started crying. I told God I wanted Connie to get a break from the throwing up and that it was Christmas. I just cried and cried all the way home last night begging God to make it better. Do you know that Connie didn't throw up at all today? I guess God heard me. Hope so.

Anyway, thank you all for your support and prayers and cards this year, especially at Christmas. What a year it has been! Today is a good reminder that while we have a long road ahead, we need to stop to celebrate. Celebrate our Lord's birth and celebrate the gift we've been given this year in Connie.

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.