Care4Conway: Yay for Yogurt!

Thursday, January 24, 2008

Yay for Yogurt!

Connie made huge progress in oral intake this week. During his therapy on Tuesday he actually ate at least 3 tbsp. of vanilla yogurt. He wasn't crazy about the blueberry, but loved the vanilla. Later that day he had 3 tbsp of banana yogurt. Yesterday he ate gerber pureed carrots! About 3 tbsp. that time too. He's opening up for the spoon and swallowing. He's still not great about taking it off the spoon. He wants to put it in himself (control issues/fear) and he bites down on the spoon and won't let go for a few seconds. He's also loving water out of the Nuk sippy cup. He kind of stopped doing so hot with the bottle, mainly just chewing on it.

His weight went up another .5 oz. this week. He had a huge bm right before the weigh in, though.

We've sped up his feeds to go in over 1/2 hour rather than taking an hour to go in. He's tolerating that well. By the end of the week or early next week we'll bump up his 4 daytime feeds to 170 mL each time and reduce the overnight feeding by 40 mL. Hopefully we can keep that trend going until he is off the overnight continuous feeding and only eats during the day (like most humans!)

Sorry that the updates have slowed down. We don't have much news and haven't been out so we don't have much to talk about! No news is good news, that's for sure!

Mookie is turning three tomorrow and is so excited about her "blue bunny cake" that we'll be having.

1 comment:

Anonymous said...: Erin,
What a wonderful update. It certainly sounds like things are moving in a very positive direction! Yeah! I hear you've been in a deep freeze just like us, better to stay in it's just too cold to venture out. Supposedly we're suppose to hit 40 this weekend, I'll believe it when I see it - or feel it ;)

Here's a little birthday wish from the Kirkebak's to MK:

Happy Birthday to you
Happy Birthday to you
Happy Birthday Mary Kathleen
Happy Birthday to you!

Can't believe she's 3 already, time sure is flying. Claire's gonna be 18 months in a few weeks, she's getting ready to transition to the next room at day-care and I'm getting a little sentimental about it. She's not my "baby" anymore. She's certainly allowing her personality to shine through these days. She's quite the helper, wanting to do everything herself and voicing her opinion if she's not happy with our decisions. Not sure if it's the first signs of the terrible two's -but it's trying on the patience at times.

I hope MK has a great Birthday celebration, and that the great news about Connie keeps coming.

Love, Caryn; January 25, 2008 at 7:41 AM

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.