Care4Conway: Dr. has been in

Monday, May 4, 2009

Dr. has been in

and he is a big believer in what the liver can tell you. Conway's liver is still very full of blood, indicating blood backing up into the heart (heart failure indicator). He is not pleased with his intake and output either so he's ordered the echo for today, is restarting him on Enalapril, the blood pressure med he was on at home, has ordered oral lasix on an ongoing basis and now demands a calorie count. Here's the part I don't like. If his actual intake is considerably lower than it should be (which it is right now), they may place an NG tube and basically force feed him. I can't believe we're talking about NG tubes. I'm so dreading that. They also want another line in him so this afternoon he will get another IV and tomorrow he has to get a lot more labs done. They want another INR along with other stuff. His potassium is too high so he's been switched to an IV fluid that doesn't have potassium in it. We now have to write down every bite of food he takes in and count the calories. I have been pretty good about remembering it all anyway, it's just the pressure of it all now.

So, Dr. Bromberg has made some changes and said that he just doesn't want to draw this out any longer than necessary. He is trying to be conservative, but all indications are pointing to this not resolving without surgical intervention so he's touching base with Dr. Balzer today about setting up a cath for later this week at Children's. Now the concern is that he'll be a bleeding risk since he's been started on coumadin so we may have to discontinue the coumadin for a period before we can go in for that. We'll see what Dr. Balzer says.

This is not the news we were looking for, but I am tremendously relieved that Conway is content. That's the most important thing to me and makes this whole thing a lot easier to bear. When he lays there miserable, like he was before we started the Milrinone, it's just so much harder to take. At least now he's enjoying some things and showing some sort of personality. He even covered his eyes and tried to count to play hide and seek with Dr. Bromberg. What a trooper. I know that is God giving him some peace. That's what I've been praying for and He's answering our prayers.

Will post when I know more. . .like after the echo. . .if he lets me.

2 comments:

H. James said...: So sorry things are not moving in the direction you hoped. I am glad you can take solace in Conway at least feeling better. Whatever happens, I hope he continues to feel reasonably well and that you get some definite answers with the upcoming echo & cath.
Hang in there!; May 4, 2009 at 12:52 PM
Faith M. said...: I know that this isn't the news you were hoping for. I'm so sorry. I am praying that your little man continues to feel better, and for wisdom for his docs. God is in control!
Hugs,
Faith Mahoney; May 4, 2009 at 3:45 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.