Care4Conway: Vaporizer

Sunday, November 4, 2007

Vaporizer

If you haven't yet, don't forget to set back your clocks!

We dusted off the ol' vaporizer last night and it seemed to help him breathe somewhat better. I guess it will be out all winter, with the dry indoor air. I forgot that when he was a small baby, still in the bassinett, we had his bed inclined and used it then too. Last night he was up several times fussing and acting like his belly hurt. He finally threw up big time around 5am (6am but with the time change. . .). He lost the tube and all. It was only an hour before we were supposed to turn off his pump anyway so we just let him go to sleep and gave him a break. We figured he wasn't due for any meds for a while and didn't get his next feed until the 9am bolus feed--if he can wait that long--so we'll replace the tube then.

Yesterday evening we took a walk after supper up to the playground. It was pretty dark by the time we got there. Bah Humbug! When we got home we had some hot chocolate to warm us up and then it was time for baths and bed. My cousin Meghan stayed with us this weekend to help out. She and Celeste "camped out" downstairs watching a movie and Mary Kathleen slept in her room.

3 comments:

Anonymous said...: Greg and Erin:

Love the new website! Your little guy is so darn cute! I could just pinch those cute cheeks. Know I am praying for him to overcome this vomiting soon and that he will soar in his development. He truly is a miracle!

Loving you and praying for you from afar!

Shari
Florence, Oregon; November 4, 2007 at 5:40 PM
Anonymous said...: Hey guys,
I love the new website. I miss seeing you guys. I had so much fun this weekend, with all you. I can't wait to do it again. Well I hope you have good, "sleepy-doo's" tonight. Love you all!

-Meghan; November 4, 2007 at 9:28 PM
Sandy Juhala said...: Erin, the new web-site is great! I'm glad you all seem to be doing so well. I really enjoy seeing the videos. It is amazing how far you all have come in such a short time. Conway looks a whole lot better. It is really wonderful to see his smile! See you on the 14th!; November 4, 2007 at 10:10 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.