Care4Conway: 10/28/07

Saturday, November 3, 2007

Sniffles

These pics are of his pacemaker and his pacemaker lead wires.

It seems as though Brother has the sniffles. He generally sounds congested in the mornings after laying all night (even though his bed is inclined) but it goes away after he's up for awhile. Well, today, his nose is like a little faucet. One sneeze and out comes gobs of goo. Not the typical drainage just from having the tube up there. We've gotten out the bulb syringe and are trying avidly to keep all of it from ending up in his tummy or worse yet caught at the back of his throat where it makes him constantly gaggy. He's been sneezing more and having a hard time sleeping more than an hour because all the gunk makes it hard for him to breathe. Please pray that this passes soon and he gets some rest and has an easier time breathing.

Morning Update

Connie had a good day yesterday up until about 5pm. I've really never seen him throw up as much as he did at that time. The tube came out his mouth so we gave him a break for a bit. We sat him in the high chair during dinner and he gnawed on a biter biscuit. He actually had enough saliva to start to dissolve it a bit and get some of it's flavor. He tired out and we stopped. I got over-zealous and thought without the tube in his throat he might try baby food, but that was a waste of a jar! He wanted nothing to do with it.

Then he went to bed a bit before 8 and kept waking up seemingly in pain. He never threw up until almost 10:30, but was sure acting like he had to. That same pattern kept going all night. He spent an hour or so being miserable then would throw up, then would sleep for an hour. Rinse. Repeat. All night long.

We may go look at the leaves this weekend if we can keep our eyes open long enough to enjoy them. Fall has arrived (the look of it anyway!)

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.