Care4Conway: Back from the Eye Doctor

Monday, November 19, 2007

Back from the Eye Doctor

Well, we left for Children's a little after 9am and once again didn't return until several hours later. We spent a whole 4 minutes with the opthamologist but the trip was over four hours! Connie and Mary Kathleen were great though. First we waited and waited to see him and when they finally called us back at 10:55 for a 10:10 appt. I was disappointed when it wasn't even a real MD or our doctor that saw us. He asked some questions and did some tests getting Connie to track toys and then he put drops in his eyes to dilate them and told us to go walk around and come back in 25 minutes. We did but they didn't see us 25 minutes later. We waited about an hour and 25 minutes and then got to see the doctor. He told us we have "great reason to celebrate" and that we "dodged a bullet" with Connie's seizure and that he has one more test he'd like to do to make sure, but he thinks Conway's eyes are not permanently damaged from the seizure/surgery. He said the only concern he has now is that Connie is "excessively farsighted for his age", meaning he works very hard to see things close up and that he wants to follow this. We see him again for a follow-up appt in mid May so he'll determine then if he needs glasses. I sure hope not. He did say that this was not related whatsoever to the cardiac condition, that it just runs in families. I am shocked because neither Greg nor I wear glasses. He seemed a little surprised that our other kids don't wear them given how farsighted Connie seems to be. Kinda makes me want to take them all in to be checked.
Bottom line is that it was a great day. Another reminder of all we have to be thankful for. We go back Wednesday for the big hour and forty five minute test that will give him an even better insight into whether or not there is anything wrong.
OT comes at 4:30 today and tomorrow is an appt. with Child Development speech path and OT to work on Oral Motor Skills at 11. Thanks for looking in.

2 comments:

Anonymous said...: Hi Erin:

I apologize for not keeping up this last week. It seems to be so up and down with Conway. Poor little guy! I hope you guys are holding up OK and the girls too. Know I pray for your precious family ALL the time! It is such a privilege!

I wanted to encourage you about Conway's eyes and just in case he has to have glasses. My now 8 year old has worn glasses since he was 15 months old. At first it was a bit of a battle then we found a strap to hook to the arms that has a sliding bead or something like that on the back. Once we put that little strap on there and cinched it a bit, he tried to take them off a couple of times and never tried again. Hang in there, sweetie! Things WILL get better.

Love to you,

Shari; November 19, 2007 at 10:30 PM
Anonymous said...: Erin:

I meant to the "arms of the glasses", not HIS arms.

Shari; November 19, 2007 at 10:31 PM

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.