Care4Conway: Steady as a Rock

Wednesday, February 20, 2008

Steady as a Rock

Conway got weighed this morning and is up another three ounces! Yay! I was starting to stress out a little since he was hovering at that 22 lb mark for so long and debating with myself over whether or not to fortify the daytime feeds to increase his calories or keep his daytime feeds at 180 ml but increase his night time feed back up another 40 or 80 ml. My stress was relieved today when the nurse told me that she calls and leaves a message every week for the GI doctor telling her the weight and if she was wanting us to adjust his feeds/increase his calories, she'd call us or have us come in for an appt. to discuss. I just feel like the pressure is off me now and I can let the doctors decide!

He needs to get to sleep for his afternoon nap (so he's rested for his PT this afternoon) but he is in there just talking away. I think he's experimenting with language a bit and likes to hear himself so I'm not upset in the least. It is actually reassuring that he is doing this. The other day Greg was changing his diaper (yes, he does occasionally do this:) and Connie was rolling all over and hard to wrangle and get the new diaper on. Greg looked at me as if to say, "I wish he would sit still" but I quickly reminded him that we ought to be incredibly thankful that he's finally moving a bit more and wants to get around and explore.

We think he's getting closer to crawling. When positioned, he'll stay on all fours and hold his head up for a few seconds. He's just not the type of kid that is highly motivated to move. He'll reach a time or two for an object that is a ways away from him and if he doesn't get it, he doesn't fret. I guess what I'm trying to say is he gives up easily! Oh well. I guess we just haven't found the right toy to motivate him with yet!

1 comment:

Anonymous said...: E -

Chuckling yet again - Connie and Claire weigh the exact same! It's soo good to hear that he's gaining and that you don't have to worry about deciding to make changes. That's what the docs are for. Although I'm sure it's a huge relief to know that there is communication between the various healthcare people caring for Connie. I don't know how you keep everything straight. So many appointments and people and feedings, your organizational skills obviously are being put to the test!

I love all the new pictures, he's getting to be such a big boy, and I'm loving all of MK's hair! And to think she didn't have hair until she was nearly 2. I keep reminding Adam of that b/c Claire's still not showing much with the exception of the stripe down the center, we're certainly not in Connie's boat needing the first cut. She can't stand to have her hair washed, I can't even imagine how unpleasant the first cut will be. I think I'll put it off as long as possible.

I hope your weather is a bit warmer than here, they actually cancelled schools today b/c of the cold (whimpy kids we had to stand at the bus stop in freezing temps!). But then it's going to be 40 this weekend. Crazy weather. No wonder all the germs are hanging around.

Love, Caryn; February 20, 2008 at 3:24 PM

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.