Friday, May 25, 2012
Conway was discharged a little after 5:00pm. We're so happy he didn't have to stay overnight. He's extremely upset that he isn't going bowling tonight, which was his wish. He also won't be able to swim for a week, which is a bummer given that pools open this weekend and it's going to be 98 degrees tomorrow! We're hoping he feels up to going to the Cardinal game tomorrow evening for Congenital Heart Night at Busch Stadium. His cardiologist will be there, too! How's that for a follow-up appointment?!
Posted by Erin Beckemeier at 6:36 PM
Dr. Balzer just spoke with us and shared the video from the cath. He is still in the lab waiting for the blood thinners to wear off before removing the catheter. Results from todays test reflect what we saw on echo last Monday, meaning so far everyone is in agreement that we are at the point where surgical intervention is necessary. Now we will wait to hear from team in Michigan on timing. After they get Connie settled in the room he'll have to lay flat for 4-6 hours. Hopefully we'll be discharged by dinner time. Thank you for all the prayers! They are working! He remained calm, excited even, right up until about 10 min before the procedure began. He was crying when they took him into the cath lab. They tell us he won't remember it. I hope they are right.
Posted by Erin Beckemeier at 10:31 AM
Thursday, May 24, 2012
I got a call from SLCH today saying that next week's cath schedule looks crazy busy so they want him in tomorrow! We leave at 5:30 and he's Dr. Balzer's first case. We feel so blessed that we were able to get Dr. Balzer after all, and some of our anxiety is relieved knowing that the same doctor who has done his other caths in St. Louis will again be the one doing it. They told us to plan on being admitted Friday night, but we're hoping it will just be a diagnostic cath and that we'll be discharged by dinner time. We'll update tomorrow during/after the procedure. Goodness knows we'll have plenty of time while he has to lay flat for six hours afterward! Pray for him to remain calm. When I tried talking to him about this coming up he started getting all panicky about the mask again. He is deathly afraid of having tubes or anything near his mouth. I think subconsciously he remembers things from infancy and that period of time when his oral aversion was so bad.
Posted by Erin Beckemeier at 2:05 PM
Monday, May 21, 2012
Well, our gut instincts were right. We have been noticing changes in Conway lately related to how much he is sleeping so we had an appointment in the middle of April where Dr. Bromberg was leaning toward thinking this was indicative of his RV-PA (right ventricle to pulmonary artery) conduit needing to be replaced to a larger size, but wanted to give it another month to rule out the possibility of Connie just having a virus or something. We went back today for an echo and sure enough, his RV pressures have gone from 66% in late February to well over 80%. Anything over 75% means that the conduit is too stenotic, or narrowed. He's had this gortex conduit since he was 5 months old, so as his heart has grown, the conduit has stretched and become obstructed. We knew it would have to be changed at some point. Now we're just crossing our fingers that Dr. Bove (his surgeon in Michigan) will be able to use a large enough replacement that it will last Conway a very long time. The thought is also that while he is in surgery he will have an additional ventricular lead wire placed and have his pacemaker generator changed out to a new, upgraded model called a bi-ventricular pacemaker. That would give us more options in the future regarding the mode in which he is paced. When he was younger, he had to be changed to VVIR mode from the typical DDD mode because of his high atrial rates. Today he was switched back to DDD mode to see if that impacts his RV pressures, but we aren't holding our breath that doing that will have any positive effect. The good news is that his function is still good! Surgeons can fix obstruction, they can't fix function, or the squeeze of the heart muscle. The next step will be to have a diagnostic cardiac cath done here in St. Louis and send that info, along with his clinical reports and latest echo to Michigan for Dr. Bove's evaluation. If he agrees that surgery is necessary at this time, we will wait for his team to schedule it and have it done at C.S. Mott Children's Hospital at the University of Michigan, Ann Arbor, where his previous surgeries have been performed. We are hoping to have it done soon, so that he has the whole summer to recover and will be ready to start Primary (kindergarten) in August. We have given the okay to have the cath done by another doctor at Children's besides Dr. Balzer. The reason being is this is purely diagnostic in nature and no interventions will be attempted and we'd get in sooner. We may have to wait weeks to get an appointment scheduled with Dr. Balzer so it would be best just to move forward with the earliest possible date. The American Heart Association Heart Walk was held Saturday at Busch Stadium and Conway had a special treat this year. He got to walk with his heart buddy, Grant, the whole time. He and Grant have the same structural defects and have had a very similar surgical path. Both have pacemakers, both traveled for surgery as infants, etc. They are only 6 months apart and our hope is that they become life-long friends on this journey. They'll be able to confide in someone that understands what it is like to have heart problems. Here's a picture of the two of them comparing their medical alert ID bracelets.
Posted by Erin Beckemeier at 4:10 PM