Care4Conway: The Latest on the Oral Motor Front

Tuesday, November 20, 2007

The Latest on the Oral Motor Front

We got back from Child Development where Connie once again showed off his progressing oral motor skills. He was able to take about 15ml of cold, apple juice flavored water from the syringe with a preemie nipple on the end. He never sucked the nipple, but would chew it a bit. He swallowed well and didn't keep it all in the back of his throat. Toward the end of 15 minutes, he had a big cough but was able to cough and didn't throw up. We moved on to some applesauce mixed in baby cereal. We just dipped the spoon in the cereal and rubbed it on his lips. He wanted to be the one to move it into his mouth. He did a couple of swallows and was receptive to the texture, but tired of the whole process so we stopped. We have an appointment to do the "swallow study" at St. John's on December 13. They will have him swallow some barium and take an x-ray to see where it's going to make sure he is not aspirating it. That is really the next step before we can move forward with increasing the feedings. At that time, we will know if it will be a matter of weeks or months before he is able to tolerate taking more food. If it looks like it will be months, the g-tube talks will resume, meaning that will likely be the course of action. If it looks like he may be eating a good deal orally by mid-January maybe, then we will just leave the NG tube.

2 comments:

Anonymous said...: Erin,
What a little show-off! He wanted to prove to those people that his mommy's been following orders and practicing with him :) It's awesome to hear how well he's doing, he's really been moving forward by leaps and bounds. Funny, I just got the notification that the site's been updated, guess I was just a little ansy to see how things went. Don't know about you, but cold weather is moving in. Yesterday it was 70 and today it's 43, no wonder Claire's on cold #2 this season. They're even mentioning snow! 'Bout time it is the middle of Nov. already.

Before I get sidetracked and time slips away, I want to wish you, Greg and all of your family a very Happy Thanksgiving. This is certainly the season to be thankful for the many blessings in our lives, and for those of us along with you on this journey, we see each and everyday the blessing Conway is in your life and you are in ours. I feel so blessed to have you as a friend. Many Blessings to you and yours this holiday!

Love, Caryn, Adam and Claire; November 20, 2007 at 3:23 PM
Anonymous said...: Erin,

Great news on Connie's tolerance to try tasting (or at least putting) some new things in his mouth!!

Sounds like the number of good days is increasing while the not so good days are decreasing!

Want to wish you and your family a Wonderful Thanksgiving! I will be sure to thank God for your miracle with Connie as well as the miracle for David Long!

The holidays can seem a little overwhelming at times, but I know I am definately going to look at them with great anticipation to be with those we love and to be thankful that I am able to share the holidays with everyone!

Have a great holiday!

Love Kim Froehlich; November 20, 2007 at 6:57 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.