Care4Conway: Another Diagnosis

Tuesday, December 7, 2010

Another Diagnosis

Conway's headaches have continued and intensified so we followed up on Dr. Bromberg's referral for a neurology consult. On Saturday, it got so bad he was going limp, getting very tired, sensitive to light and finally vomited. Dr. Davis was able to see him and ruled out any illness. Today we got in to see a neurologist at St. John's, Dr. Altman. He looked over Connie's CT scan from April, listened to his history and examined him. It's his conclusion that Connie is experiencing migraine headaches. As someone with a history of them myself, this news was devastating because I know how I suffered so with them. Dr. Altman was quick to point out that of the other things it could be, though unlikely, this is the best problem to have. The other things include the possibility that he's having mini seizure-like activity or that he's got a growth in his brain. We'd rather it not be either of those, for sure! He did schedule an EEG just to rule out any seizure activity but wants to hold off on any more testing. If Conway complains more than usual or they get much more severe, he'll schedule another CT scan, this time with contrast. Ideally, he'd love to see results of an MRI, but Conway's pacemaker takes that option away. His CT from April shows four calcifications, or "stones" in his parietal occipital region of his brain. While unable to be proven, the likely cause is his time on the pump (5.5 hours) during his first open heart surgery.

So for now we treat with Ibuprofen until the frequency increases to 2 or more times per week to the point where they inhibit his ability to function fairly normally. If that happens, we will start him on a daily maintenance drug if cardiology clears it. That option isn't too appealing though because the side effects of the drug include fatigue and weight gain. I don't think it would be good for his heart for him to carry around extra weight and my fear with the fatigue thing is that one sign of heart problems is fatigue so I'd be afraid that if he were tired, we'd just write it off as a side effect and miss a potential heart issue.

Dr. Altman quickly became a fan of Connie, just like everyone else who meets him. He had that look in his eye when he told me, "Mom, your son is really a special boy. You sure got a good one." On a side note, as we were leaving he asked, "You call him Connie, right?" I hadn't written that on any of the forms or anything! Turns out he was in the doctor's lounge the other day and ran into Dr. Bromberg and they were discussing him. At that time, Dr. Altman didn't know that the CT scan he was carrying in his back pocket and looking over was the same patient Dr. Bromberg was talking about sending his way. Anyway, it made me feel so good and confident in his care that once again, Dr. Bromberg has our boy on his mind and goes the extra mile to look out for him.

3 comments:

Nurse Caren said...: I will have them keep a headache log in preschool. Keep me posted. I was not able to "subscribe?"

Hola Connie!!!!!!
Be cool in school!
Nurse Caren; December 8, 2010 at 8:45 AM
Anonymous said...: God is asking much of you, dear Erin. Count on my prayers for you, Connie, and the whole family. I am positive God will send some special grace to you all this Christmas. Love, Sister Josephine; December 8, 2010 at 11:17 AM
Wendy C said...: Sorry I am reading this post a little late but wanted to comment that Andrew (also l-TGA) started having migraines around 5 yrs old also. i don't know if it has anything to do with the CHD as there is family history both in Connie's and Andrew's cases.
We ended up only treating Andrew's with Tylenol and letting him sleep them off. He still gets them sometimes.

Heres his carepage if you want it. Carepages.com and his carepage name is andrewjosephspage.

Heart hugs,
Wendy; December 23, 2010 at 5:26 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.