Care4Conway: Still holding his own

Friday, August 28, 2009

Still holding his own

No More ET tube!

Still intubated and a little puffier

With Grandma Marybelle

With Uncle Geoff

I love Daddy

Connie's had more blood gases and they still look great, despite a few incidents and being pretty uncomfortable. He got suctioned and was not happy with that and dropped his sats and pressure and RR and HR went up. This lasted a few minutes before slowly creeping back up. The nurse says we're no where near reintubating yet so not to get too alarmed. He's needed a second dose of the breathing treatment for stridor and some ativan b/c he doesn't seem in pain, but is definitely quite anxious and more aware of his unusual surroundings. He is asking for his "pod" (iPod), to eat, for help (which means he wants help down off the bed) and saying and signing "all done". He also asked for more when the first episode of Max and Ruby ended. He was definitely paying attention, even though his eyes were closed.

3 comments:

Anonymous said...: Thank God!!!!!! I can't tell you how happy I was to get the web page up and see his little face with no TUBE!!!!!!!! I brought tears. I love you guys and we are still praying for you to be home soon.

Uncle Terry; August 28, 2009 at 10:33 PM
Lisa P said...: I'm so relieved that things seem to be going well for your little fireball! Its so endearing and definitely a great sign that he's recognizing some of his favorite things and ASKING for them!! I really hope you guys have a good night and can actually get a little sleep and peace.

Take care of yourselves!

Lisa; August 28, 2009 at 10:52 PM
krissy ringo said...: glad hes extibated andhope he stays that way!! also hope your night went smoothly... notsmooth sailing here... very hurting matthew!; August 29, 2009 at 6:45 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.