Care4Conway: Weighted NG Tubes Rock!

Sunday, November 4, 2007

Weighted NG Tubes Rock!

We are discovering that the NG tubes with a little extension and some weights at the end that goes into the stomach tend to stay put a little better during violent vomiting episodes than those without. 2X today he has thrown up his tube out of his mouth. Next time it gets changed or thrown up we will grab the one with the weights to replace it.

Conway had a pretty good afternoon. He took a nice nap and did great with his "homework" again. We tried the biter biscuit after the water on the spoon and he played with it for awhile and then threw it. Belle (that's our dog)liked that and decided hanging around his high chair was a good idea. Little does she know that he rarely has anything to eat in it! He looked shocked that it was gone so I got him another and split this one with Mary Kathleen. She kept saying that, "When Mookie is a baby she can have a biter biscuit." She hears us say that when she's older she can have things like gum, etc. so I guess she figured if she was younger she would be allowed baby food items. Makes sense to her! He chewed on that one some and then lost interest. Mary Kathleen helped put the spoon to his mouth and he seemed very engaged while she was there helping. Please pray for continued progress in the area of oral motor. He is making progress, but it is slow. It seems we have a couple great days and then a bad day. It is hard to remember how far he really has come. I want him to be all the way back, but it won't be overnight.

Along the lines of progress, I'm happy to report that Mary Kathleen has pooped in the potty for the first time!! She's been peeing for a couple of weeks but today was the first time for #2. She didn't even say she had to or anything. I took her to the potty after her nap and when she said she was all done there was a big surprise for me!

Lord, We thank you for continuing to show us your mercy and love. We know you are working in us and through us, especially Connie. Grant him rest and comfort tonight so that he may continue to heal and get stronger. We are trying to remember to praise you, even in the midst of the storm. Even the storm is a gift. Please bless our loved ones and all those pulling for and praying for Conway. We ask these things in your son's name, Amen.

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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.