Care4Conway: On our toes

Thursday, August 27, 2009

On our toes

Well, during that hour or so that we had to leave, somebody woke up and decided he wanted to get out of bed. He reached for Kelli and was wide awake wanting to be held. She knew when he saw me he'd really go nuts. She asked immediately for some sedation. Morphine and Ativan were useless. Then they starts dex and went up on morphine drip. Still climbing out of the bed and rolling over. Dr. Bocks ordered him paralyzed until they can safely sedate him. All his yellow lines on the vent (him breathing on his own) are gone and it is doing all the work for him. He's added two more drips to his med tree now. This paralytic is supposed to last 2-4 hours and he's already waking up. Please pray he settles out and calms down u til morning.

7 comments:

Yvonne Mallon said...: Ummmm, sounds like someone else I know!! We were on morphine and ativan at 40 and I was holding her down. The dex she liked!! She did not require a paralytic. Hopefully he will respond well to the dex. It usually works well. I am thinking of you!!; August 27, 2009 at 7:19 PM
H. James said...: I just caught up on the day. What a DAY! I am so glad everything in the OR went well and it sounds terrific that he won't need multiple replacement conduits. I'll admit, I'm a tad bit jealous (as only a heart mom can be) but frankly overjoyed for you & Conway. As to the waking up & fighting the vent, I say that only speaks to how incredibly strong he is. I can't wait to see how he does after extubation and (hopefully) not being in heart failure!! Thanks for all the timely updates. We'll be hoping for minimal bleeding and maximal rest overnight.

All our love from Michigan (where we are visiting Petoskey),

Your Wisconsin L-TGA friends,
Heather, Tim, Bailey & Libby; August 27, 2009 at 7:21 PM
Unknown said...: Thank god!!!! I am so happy that everything is going so well. Isn't it amazing the amount of med these little one can handle? I'ld be asleep for a week. We are continuing to pray for Connie and we appreciate all of the updates. He's looks great in the pics.

Nicole mom of Lorelei HLHS; August 27, 2009 at 8:52 PM
Unknown said...: Boy, he looks great! Sounds like he is quite a fighter - what strength he has (must run in the family)!! We'll keep praying. Hoping for a restful night for you all.; August 27, 2009 at 9:00 PM
Staci Budde said...: Just checking in and praying things stay smooth!! I hope he calms down and gets some rest!! Glad they were able to accomplish what they set out to do! Hopefully this is it for a long while and he will be back to the normal crazy little man he is!!
Prayers and Love,
Staci; August 27, 2009 at 9:01 PM
Anonymous said...: Is it Kelli VanValkenburg that is your nurse???? If so, please give her a HUGE hug from the Strauser family. She was Kellen's primary nurse and we love her! Praying that Conway has an "uneventful" night with sucessful extubation tomorrow!!!

Tawnya Strauser; August 27, 2009 at 9:07 PM
Lisa P said...: Wow, I always miss a lot of action when I step away for a while! Looks like they have their hands full with your little wild man! I'm hoping that overnight, he'll respond well to the sedation and won't require as much of the paralytic. I'm sure every day he'll do a bit better. Looking forward to a good update in the morning! Don't think I can stay up late tonight to catch the evening updates.

XOXO -
Lisa, Grant, Natey and Scott; August 27, 2009 at 9:10 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.