Care4Conway: Asthma

Thursday, December 13, 2012

Asthma

Conway will be adding a new specialist to his medical profile. On Monday, he has an appointment with a pulmonologist. We've known for some time that he has viral induced asthma, which presented itself as a cough that just wouldn't go away after an illness. Well, within the past four days he has twice spent the wee hours of the morning struggling to breathe. He gets scared and so do we. To hear your five year old tell you he wants to breathe but just can't is possibly one of the most heart-breaking phrases he's ever uttered... right behind telling me he was "actually ready to go home" after he just couldn't bear the chest tube discomfort any longer last August. At the advice of the school nurse and our own gut feeling, I called the cardiologist to get a recommendation for a pulmonary specialist. His cardiac nurse has a son with severe asthma so she knows just how we feel. She even offered to personally call to set up an appt. if "we got any run around" and weren't able to get in for awhile! Luckily we're set up first thing Monday. Since he has to be the one that everything happens to, we also just discovered at a check up that he has a cavity. Since it is on a molar they want to crown it. We've read there are some different schools of thought on treatment so we haven't decided anything yet. He already dislikes the dentist. I can't imagine how he'll be when they inject a needle into his gums! This afternoon I went for my monthly check up on the new baby girl. Everything is right on track. The doctor said today she'll induce me a week early for a couple of reasons. One is that Karsten weighed nearly 11 pounds and he was born a week early. The other is that Mary Kathleen's First Holy Communion is the day before my actual due date. Obviously she's not scheduling it for convenience sake, and there is a very legit reason to get the ball rolling ahead of schedule. I am breathing a sigh of relief to think I won't have to worry about missing out on such a big day for MK. I missed Cece's First Communion because Connie was in the PICU at Mercy in heart failure. So, now there is a very real likelihood that this child will share a birthday with Karsten! Please pray Connie will breathe easy and for God to show us the best treatment path for his asthma and his cavity.

2 comments:

Anonymous said...: Happy and Healthy thoughts!
Call me if you need anything! I am also a volunteer for AAFASTL!
Woohoo on baby girl arrival!
Nurse Caren; December 14, 2012 at 8:13 AM
Anonymous said...: Hi Erin,

We know what it's like to deal with CHD and asthma! (Angela has an appointment with her pulmonolgist this pm.) We're sorry to hear Connie has to deal with this too. I hope he's breathing easier and has more energy soon.
Monica Farrell; December 14, 2012 at 8:30 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.