Care4Conway: Not so fast. . .

Saturday, May 2, 2009

Not so fast. . .

Well, the reduction in heart rate to a max of 110 didn't do the trick to helping him feel better. He threw up big time around 6:30 (from his 2:30 lunch and 4:30 juice) and Dr. Bromberg came back and said that he's just going to be harder to bounce back from this failure than he thought. Now we are not coming home tomorrow as they have started him on a milrinone drip (IV). They have to draw blood twice a day to check his levels so that consists of a toe prick and a ton of squeezing. Now that he's on coumadin, that should leave some nice bruises! The coumadin levels are not built up in his system yet so he's not bleeding easily just yet.

He was getting the most sound sleep he'd had in days when they had to come poke him. He's been up since and had some saltine crackers and sprite. Dr. Bromberg wants us to go a bit easier on the tummy so we didn't order him a dinner of real food. He might get some cheerios later if he shows any interest. He is sitting on Daddy's lap watching a Baby Einstein video from Child Life Services. Ms. Chris would be so proud of all the words he's practicing while he watches. He blew Nurse Laurie a kiss when she left and said bye and waived. She'll be back in the morning and has requested to have him if she doesn't get transferred to the NICU or something.

So, we've had a bit of a set back, but nothing we can't find a way to manage. Dr. Bromberg will be back to check on him in the AM and gave them his numbers even though he's not the one on call this weekend.

3 comments:

cuppie12 said...: Wow, you guys are seriously AMAZING. To stay as strong and positive as you have in the midst of so much turmoil is simply awesome. Connie is very blessed to have such wonderful parents. And Mary Kathleen, my God daughter, what a cutie - that was such a sweet prayer she said! Connie has obviously been in our prayers, and will be tomorrow at 8 a.m. in church. I hope you have a stress-free and restful night. Love, Jessie; May 2, 2009 at 10:02 PM
H. James said...: Slow and steady, right? He'll get there!!; May 2, 2009 at 10:19 PM
Natalie Bourque said...: my daughter, brittany, was born 8/24/98 with the exact condition... ltga and a huge vsd between her 2 lower chambers. We were unable to get the double switch because there were vessels that would be disabled if they closed her vsd so we had the fonten and glen shunt, as well as a pa band. I found your info on the yahoo site.I also have a blog that I have just recently started so I will add and look forward to hearing your stories. My thoughts and prayers are with ya'll and I hope that someday soon all of these complications are just a past experience that you grew stronger through. God bless ya'll. Natalie Bourque; May 3, 2009 at 11:10 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.