Care4Conway: Extubated

Friday, August 28, 2009

Extubated

Connie just got extubated. The chest tube placement was great as it relieved over 200 cc's of fluid from around the left side of his heart. He started getting a little too sleepy and not breathing over the vent so they went down on the morphine drip so that he could wake up enough to breathe in anticipation for extubation. He sprinted for an hour and was completely restless the whole time, taking two of us holding him. Wouldn't you know he's been clear sounding all day until it's time to extubate and then you can feel the junk in his chest and hear it when he was sprinting. They extubated and he's really working hard so they are calling it stridor and treating him for it. He's had it before and two treatments did the trick in the past. Once he proves he can breathe on his own, we can give him some more sedation to calm him down, but he has to prove it first. So right now is hard watching him be upset and then that makes it that much harder to breathe. Pray that he gets rid of this stridor (upper airway blockage) and settles down. Probably no holding any time soon, at least not yet. They want him off the dopamine and maybe with less lines. Of course, if he is really unhappy, they may let me as a last resort to calm him down. He's such a momma's boy.

3 comments:

5xBlessed said...: Hang in there Erin! Continued prayers. He is such an amazing boy!; August 28, 2009 at 5:31 PM
Anonymous said...: This is so hard for you to go though, seeing your little boy struggle to breathe and get better. All the Sisters have been praying and asking about Connie and you as well. I am convinced that God will give you that special little burst of strength and faith you need. Love and prayers always, Sr Josephine; August 28, 2009 at 5:38 PM
Krissy said...: Yay for extubation!! I know these times are tough to get through, but you guys are strong! Sofi was intubated for 2 months after her transplant and I went through some pretty deep depression, but now that its over and I can hold her whenever she lets me, the memory of how bad it was gets more faint. Hang in there!; August 28, 2009 at 6:00 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.