Care4Conway: 10/18/09

Saturday, October 24, 2009

Flu Update and More

Thankfully, everyone in the house was able to remain flu- and strep-free thanks to Tamiflu, constant sanitizing and keeping MK restricted to her room for five straight days.

Now for the badish news. Conway's activity level has decreased a bit, he's not eating as much, his sleep is not as restful and his little neck vein was pulsating yesterday. Then last night he vomited out of the blue. We did a pacer check yesterday which looked fine, but we've been fooled by those before so Dr. Bromberg offered to meet us at the office this morning to check him himself and help us be reassured that he was not in atrial flutter. Good news is he is not. Bad news is that his liver is bigger and with the other changes, it indicates that he's not handling the changes we made at the last visit.

Due to this, we will go back to the Lasix twice a day. Part of me feels so defeated that we are moving backward in the recovery process, but then the other part of me is so relieved that this is not flutter and we don't have to reintroduce that nasty Amiodarone. It's amazing how quickly you can be thrust back into the reality of CHD. Dr. Bromberg said that we might have been a little ahead of ourselves because he really looked so good last time he saw him and he does think he's not as good now. Hopefully this is the change he needs to get back on the speedy recovery track. This isn't a life sentence to 2X/day lasix, we can still wean him down eventually. We'll just take it a little slower from here on out. He said to call him in a week to let him know if he's improved and if not, then he'll adjust his pacer settings to see if that helps.

Prayers are appreciated as always. Focus them on God using the increased diuretic to help Connie's heart failure symptoms improve so that he can bounce right back to the path he was on.

Monday, October 19, 2009

Preventative Measures

Despite our best efforts to stay well (not frequenting public or crowded places, good hand washing, pulling MK out of preschool, etc.) it seems that the dreaded swine flu has hit our home. Greg woke yesterday with a fever, cough and headache. He was ordered to be tested for flu but the test came back negative. Then about 5am Mookie started complaining about headache, cough, sore throat and had a low grade fever. She also had some 3 loose stools before 10am. She visited the pediatrician who swabbed her as well and her tests came back positive for BOTH the H1N1 flu and strep throat! Unbelievable. Her doctor said that if 10 people actually have the flu, only 6 will test positive on the rapid test, meaning Greg for sure has it too. His doctor confirmed this and prescribed Tamiflu immediately. MK is going on Tamiflu and an antibiotic for the strep. Connie and I are to start the preventative dose of Tamiflu since we are at a higher risk of complications from the flu (being a heart patient and me being pregnant). Connie's cardiologist ok'd it and also gave us a bit of good news. Last week he had blood drawn to check his BNP level, the one that measures heart failure. Remember this summer how he was in the 7000-8000 range (extremely elevated, meaning severe heart failure)? His number is now only 1800!!! That is much improved. While it is still elevated and we don't know exactly what it means in children, we do know it is a lot better than a couple of months ago so we'll take it. If the cardiologist were to check every complex chd kid in his office, he might find a similar number. We also know that his liver is a totally better size indicating no signs of heart failure! Now if we can just keep him from getting the flu... I asked the pediatrician about taking him to my parent's house or something and he said it was too late anyway. Just separate them the best we can and get him on the tamiflu. So, that's what we'll do. We'd appreciate some prayers for speedy recoveries for both Greg and Mookie and that the rest of us can avoid this plague!

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.