Care4Conway: Settling in again

Thursday, May 7, 2009

Settling in again

We are moved. They decided not to wait until he woke up because the other little patient our nurse had was moved earlier and she was pretty spread out trying to keep up with both of them all the way across the unit so we wheeled him quietly around to his new space. Problem was, his bed wouldn't fit. It was quite the ordeal, with four or five nurses trying to get him in the room. Of course he woke up during all of this. After some rocking he decided to be in a good mood and is now mowing on lucky charms and raisin bran (dry) while we wait on his lunch order to arrive along with a bedside table so we can keep the crumbs out of his lap and sheets! Wouldn't you know, our roommate is a teeny newborn who has been quiet all day until we arrived. It's also one more set of monitors that beep and alarm constantly. He doesn't have any parent with him. The nurse said a grandparent is here, but he must have stepped out for a bit. Poor guy. We did get the window space, for those of you who recommended it, thank you! It is quite a small room. I think it is smaller than the one he was in and that only had one kid! I think they may let me use a phone in here and possibly even eat in here so that is one bonus, I guess. The fellow on the unit said that she hasn't totally evaluated it, but at first glance, his echo from this AM looks like the LV function has improved. That's good news. He's still on milrinone and they haven't ordered it stopped just yet. The nurse said they may decide tonight on rounds when to do that. He's not getting Lasix anymore and the fellow said unless he's not peeing enough or starts getting puffy, that he won't get any. I asked the nurse if the plan from here was to get off the milrinone and see how he was 24 hours out and then go mhome and she acted like home wasn't even in the discussion yet :(

1 comment:

L. Pappalardo said...: I'm glad you're on the window side - I think that will make a difference, especially since the rooms are small. If the little guy gets moved out, they may even let you spread out a bit! Re: the nurse and home...I wouldn't get too discouraged yet. I'll bet they're just being really conservative since he didn't do so well coming off the milrinone before. Hang in there.; May 7, 2009 at 12:59 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.