Care4Conway: 9/6/09

Thursday, September 10, 2009

Post Op Visit

Connie saw Dr. Bromberg this morning and we are grinning from ear to ear. Dr. Bromberg was practically giddy with the improvement he sees and hears. His overall clinical presentation, his echo and parent report are all greatly improved. He can watch the echos from his office and he came in before it was even over saying, "This looks a LOT better!" He is a bit stunned at how insignificant the aortic insufficiency is now given the fact that the aortic valve wasn't touched. I told him that we believed it was God and he nodded his head as if to say that he certainly didn't have a better explanation himself! We had noticed a bit of improvement in Connie's symptoms before we left for Michigan and they confirmed in the cath lab that first Monday that his AI and LV looked "better than expected." We had been so fearful that he would be in such bad shape before the surgery that it would be nearly impossible for him to withstand such a big operation. We know in our hearts that God gave his heart a little boost right before surgery so that he would be strong enough to tolerate all they did and to recover with lightning speed! We are keeping his meds the same for now, and in a month will decrease the lasix in half. He said that he sees a day (but I'm not allowed to hold him to it) when Connie will no longer be on Enalapril (blood pressure med). The whole office seemed genuinely thrilled with our outcome. We go back in a month. He said that generally what you see six weeks post-op is pretty much what you can expect long-term, but he is very hopeful that since he's already seen so much improvement so soon (only two weeks out), that we have a great chance of Connie pretty much being a lot healthier from here on out. He thinks his growth will start to take off now and thinks that every day we'll see him getting stronger and more active. We aren't "out of the woods" yet on the atrial flutter. Time will tell on that one. He said that if he goes six months without any episodes of atrial flutter after being off the amiodarone, he'll be more inclined to relax a little about that complication. We have been thinking Connie was doing great, and now we have the tests to prove it! Thank you all for your prayers and thank you God for the blessings you have given us! We have come to always expect complications and trials and it's been so wonderful to have the outcome we hoped for, to have had a smooth experience. Dr. Bromberg said that Connie has had a pretty traumatic five months and is so excited for him to have the opportunity to finally feel good and be a "normal boy."

Tuesday, September 8, 2009

Update on Infection

We held out on going to the ER for fear of what we might sit next to in the waiting room. His other two chest tube sites also got red and sore looking, but we kept up with applying betadine and triple antibiotic ointment. He was due to get the stitches out at 9am this morning anyway at the pediatrician's office, so that's what we did. Dr. Davis was sure glad to see Connie home after such a short hospitalization. He said that he thought they looked inflammed, but said that is a normal reaction to those stitches. He removed them and gave us a script for Bactriban, which he said is better than neosporin. We filled it and will apply it three times a day to each site until they are healed. Next up. . .Dr. Bromberg on Thursday at 12:30. Thanks for praying. We are kind of holding our breath for Thursday to "make sure" that he's doing as well as we think he's doing.

Sunday, September 6, 2009

Infection

Connie's left chest tube site is red and swollen and yucky looking. We called the cardiologist's exchange and Dr. Bruns (on call) said to try to treat it first with betadine and neosporin and cover it with a large bandage. If it doesn't improve, we will have to take him into the ER. Ugh. That's the last place we want to be with him right now where who knows what all he will come down with after being there plus the fact we'll have to wait five hours just to have one stitch taken out. What we're saying is we could use some prayers that his site gets to looking better so we can avoid the ER.

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.