Care4Conway: Rounds are Complete

Thursday, May 7, 2009

Rounds are Complete

The team of docs just finished rounding. Connie was awakened at 6am for his blood draw. The flabotomist (sp?) did a fabulous job. She found a vein right away in his arm, not hand where it is more painful. It took all of 30 seconds. Then they called x-ray back up to get a picture of his chest and he was just about to drift back off to sleep when they came to round on him. The plan for the day is to check his labs before restarting/deciding the coumadin dose, restarting the dig and enalapril today, coming off milrinone and watching function. He's due for an echo later this morning. Once he's off the milrinone there is no reason for him to be in this "fishbowl" (CICU) according to Dr. Van Hare, so he will likely move out to the floor later today. No timeline has been given on how long we can expect to be there.

He's watching Bob the Builder, playing an alphabet game on Greg's iPod and thinking about drifting back off to sleep.

As far as the hyperactivity we saw last night, Dr. Checchia said, "Well, we did give him an electric shock," which is rather stimulating! And Dr. Van Hare added that a lot of times the drugs they use to induce sleep for procedures for them to sleep half the day end up keeping them up half the night.

I will say, it was pretty quiet around here last night. I decided not to ask for a new nurse and it all worked out just fine. She even advocated for him a few times, once when they came for x-ray around 5 and she knew he had labs scheduled for 6 so she asked x-ray to come back later so he could sleep. Also, when I had questions about whether or not he would be getting his dig or coumadin before bed she went and got an answer right away. Our experience in Michigan was that sometimes you had to wait quite awhile for nurses to ask MD's things, so that was a nice surprise.

3 comments:

L. Pappalardo said...: All sounds like good news! The sleep thing will work itself out, but of course, not before you are exhausted! Why don't you let me come relieve you today so you can nap? Even if for an hour or so? I know you need the sleep. Re: the custodian coming in at 3am - just make a BIG sign that you can post on your door when he is sleeping that says STAY OUT unless absolutely necessary. We did that at LP and it worked wonders. They wanted to come in one night and do non-critical respiratory therapy at 10pm and I was like UHHH, NO! Talk to you today! Things sound really good! Van Hare sounds like a rockstar, by the way.; May 7, 2009 at 8:10 AM
Maureen Q said...: Was thrilled to read the latest. Greg's post was very dear as well. I agree with LP...make a LARGE sign to keep the unnecessary people out during the night!

Will keep the prayers flowing from all directions here. Peace be with you.; May 7, 2009 at 8:33 AM
Dietrichs said...: We're so happy to hear Connie's procedure went well yesturday and hope that you'll be able to bring him home very soon! Let us know if there's anything we can do to help.

Sending love and prayers,
The Dietrichs; May 7, 2009 at 10:04 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.