Care4Conway: Swallow Study Results

Thursday, December 13, 2007

Swallow Study Results

Well, Dr. Brady hasn't reviewed the results yet, but Renee, the speech path, went over the test with me after it was over. I'll get to that in a second. First I'll tell you what happened. We got there with our little "bag of tricks" and sat him in a chair up high off the floor. The x-ray table was flipped upright and was on his right and on his left was the x-ray machine. Renee handed me various things to try to get him to eat/drink. We started with a sippy cup which he readily opened wide for (to my surprise). He allowed it in his mouth and seemed happy about it until I squeezed a little bit of barium mixed with apple juice in his mouth. You should have seen the face! We tried giving him the barium mixed in all sorts of things including purees and milk. We tried it with a spoon, syringe, cup, etc. He preferred the syringe, but only tolerated it a couple of times. We were able to get seven good swallows, enough for the test! I was so proud that we were even able to do it. I thought he'd be tight lipped the whole time and not take anything. He didn't cough and gag and go crazy either. It was so good. 45 minutes was his max and we decided we got enough at that point. It only took three people and 45 minutes for 7 swallows, but it was worth it! The test showed that he is NOT aspirating (swallowing the food/liquid into his airway). Based on this, it is safe for him to eat. We are allowed to advance with feeding and drinking during therapy and when we work with him at home. What it doesn't tell us is why he doesn't want to eat or swallow. We don't know if it is a behavioral, learned thing, if it is related to reflux (she mentioned secondary aspiration as a possiblility) or what it could be. We've ruled out aspirating though so hopefully once Dr. Brady gets the info she will get with us on the next step, whether it be more studies or what. Basically, it was the best news we could hope for. If he was aspirating, I don't know what we would have done, but I know what we couldn't do and that is try to put food/drink in his mouth! My mom said tonight that she just had this funny feeling that came over her that today was the beginning of healing for him (as far as the vomiting goes). Boy, I hope she's right!

2 comments:

Shari said...: Erin:

I am so glad the swallow study went well. This is de ja vu for me. We had the same issues with our little guy. How I wish I was there to help you. Know I think of you often and pray daily too.

Lovingly,

Shari; December 14, 2007 at 10:58 AM
Anonymous said...: That is great news! We'll keep praying that the food issues are resolved. I love the new picture of him with the lights. He is so cute!

Merry Christmas!!
Sandy Juhala; December 15, 2007 at 8:53 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.