Care4Conway: After the Rounds Wednesday AM Update

Wednesday, June 17, 2009

After the Rounds Wednesday AM Update

Conway is sleeping now and has been since about 7am! Finally a whole hour uninterrupted. The nurses up here tried to get blood and poked him 2X unsuccessfully around 4:15am and again at 5am. At 6:45 the phlebotamist came up and it took her two attempts as well. Poor kid got stuck six times for that elusive INR level. He had great veins, they just weren't drawing. It was so heartbreaking to watch him cry so hard. He's definitely not dehydrated b/c he had real tears and lots of them. He's so freaked out just by the presence of any personnel in the room, even those that don't give him "owies". He monitors everyone's movement in the hallway too to make sure they don't come in his room. He's so untrusting right now. Of course he doesn't believe me when I tell him it will be okay either.

Dr. VanHare wasn't present during rounds so nothing was really decided. They did start him around 5ish on some IV fluids and IV milrinone to help the heart. If they do go ahead, he'll have to be NPO (no food or drink) so right now they have that in place. Hopefully they decide so that when he wakes up he can eat if he's not getting it. Not that he'll eat much, but with the milrinone, he might feel more up to it. He did have a wet diaper upon admission to the CICU last night. After no wet diaper for over 24 hours, he peed 32cc's! That's not much, but better than nothing, I guess.

Thanks for your continued prayers.

Erin

4 comments:

H. James said...: I just caught up with your adventures (if you can call it that) from last night. I am so sorry Connie is back in ICU again. And that they just can't seem to get a line in him or draw labs without multiple sticks!

I hope they can go ahead & cardiovert him today and get him back on track. Hopefully the amiodarone will keep him out of flutter/fib and make the possible side effects worth while so you can avoid further ER visits & ICU stays!!!

Keeping you in our thoughts today,

Heather; June 17, 2009 at 8:54 AM
Unknown said...: Erin,

Just checking in again this morning and will continue to pray for Connie (and you!).

Don't forget to breathe.; June 17, 2009 at 9:17 AM
Anonymous said...: May God grant you always...
A sunbeam to warm you,
A moonbeam to charm you,
A sheltering angel, so nothing can harm you.

Thinking of you and Connie.
Michele R.; June 17, 2009 at 9:56 AM
Kim Froehlich said...: Erin,

You are all in my prayers. I am amazed with all you guys are going through. In the same breath, I am also amazed at how well Connie overcomes these experiences!

I'm sure having supportive parents, family and friends helps you all get through each event of each day.

He is in the best place he can be now and I'm glad your experience there is good as well.

Thank you for keeping us posted - and I hope Connie feels better and rested and that all procedures are quick and successful.

Love Kim; June 17, 2009 at 10:26 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.