Care4Conway: It's always something

Wednesday, February 18, 2009

It's always something

Connie's back to eating like a little piggy. On Sunday he had three breakfasts! He's acting like a normal boy and even learning some new words. He's been requesting Melmo (Elmo) and nog nog (chocolate milk). He used to call egg nog "nog nog" but since it is no longer the holidays and isn't as readily available, he's now convinced that mixing chocolate Carnation instant breakfast in milk makes "nog nog". To each his own.

For the not-so-fun update: Mary Kathleen has been having these hive-like outbreaks for weeks. Assuming it was a virus or allergies, we treated with Benadryl on the pediaticians recommendation. It's been going on a bit too long for my taste and last Friday, she had some major nodule lumps break out on her feet and hands. We took a video of the feet and had the doctor watch it. He ordered bloodwork looking for allergic reactions and it came back normal. That was discouraging because we were sure it was an allergy. Benadryl was working, but just completely wipes her out so it's not a long term solution or anything. After getting the results of the bloodwork, he referred us to a RHEUMATOLOGIST! Can you believe it?! He said he wants to rule out any sort of Juvenile Rheumatoid Arthritis. Hearing that definitely scared me and then angered me when I discovered that we can't see the rheumatologist until APRIL 6. We have since switched her to one daily claritin, which doesn't make her drowsy and so far (knock on wood) has prevented any outbreaks. That has kept me hopeful that it is just an allergy after all. If you could say a prayer that this stops or that we can get to the bottom of it and that it is not something that is degenerative or long-term.

1 comment:

H. James said...: I am so sorry! Hopefully this turns out to be something allergic that just didn't show up on the tests. I am glad the claritin is working & letting her stay awake. It is so frustrating to not know what is going on and then to have to wait to see an "expert" to help. I am so hopeful this will turn out to be nothing other than a nuisance & time consuming worry (about nothing).; February 19, 2009 at 6:17 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.