In January of this year he wore a 24 hour Holter monitor (like an EKG that records for 24 hours). That showed he has another rhythm slipping in. Eli has been having 2-3 minute runs of atrial tachycardia (possibly atrial fibrillation/a-fib) with a rate of over 200! Dr. Steinberg, Eli's cardiologist who specializes in electrophysiology (the pacemaker doc!), said as long as Eli tolerates the low rates, he isn't overly concerned with how low it goes. However, he is not comfortable with Eli breaking into a high atrial rate multiple times a day. We've always known Eli would very likely need another pacemaker, Dr. S just always wanted to wait as long as possible before placing another foreign object in Eli because of his history with staph. In an effort to prolong that even with this new development, Eli was started on Atenolol. It's often used as a blood pressure medication, but a side effect is that it lowers the heart rate. Here, we were using it to keep him out of that high atrial rate, but that would also lower his resting rate even more. Dr. Steinberg stressed that this medication was a temporary use to put off going straight to a pacemaker and to give Eli's cardiac team time to review his case and make more plans. After several weeks on the Atenolol, a Holter showed that Eli was not experiencing the high atrial rate (yea!), but his resting rate was down to the mid 40s. When he was asleep his heart was only beating 30 times a minute! In addition, he's experiencing several symptoms caused by this lower rate. He's more tired, not necessarily sleepy tired, but shorter attention span and very cranky. He's also more blue around the mouth, fingers, toes, even nose and ears sometimes. This tells us his heart isn't pumping the oxygenated blood as well as it used to. He's harder to wake up from a deep sleep. In fact, he sometimes sleeps so soundly that he has actually slept through some nighttime accidents which is very unusual for him. After he began experiencing problems, he had an echocardiogram and appointment with Dr. Kumbar (Evansville cardiologist). His echocardiogram showed some changes since his last one in January. She believes any changes she noticed in his heart function is because of his low heart rate now being able to keep the blood flowing smoothly, not because of a weaker heart.
So all of this was relayed to his team in Indy. With Eli's complicated heart, there's not a simple answer. What they've decided needs done (and this surprises none of us) is to proceed with pacemaker placement. Sometimes pacemakers can be placed without actual surgery, but that is not an option for Eli for several reasons, mostly because of his unique cardiac anatomy. So Eli will be heading to the operating room for his fifth open heart surgery. Again, it's not a simple thing to do for Eli. There's scar tissue from four previous open heart surgeries to work through to place the pacer. The last time he was under anesthesia for a cardiac surgery, he had major strokes. Adding to our list of things to worry about, the surgeon who did his previous four surgeries is no longer with this group, so we have a new surgeon. It will be Dr. Mark Rodefeld, who is actually legendary I the pediatric cardiac world. We know a family whose son had a heart transplant done by Dr. Rodefeld (remember Caleb? We asked for prayers for him many, many times). We know other families who've also had positive experiences with him. However, we haven't met him yet, and just the fact that he's not the one who has tinkered around in Eli's chest cavity the other times makes us nervous despite his many achievements. He asked for a whole day in the OR so he's not rushed during Eli's case. I haven't asked how long they expect his surgery to take, it won't do me any good to now that now! However, I like that he recognizes how complicated this is and is taking Eli very seriously. Eli's surgery will be at Peyton Manning Children's Hospital at St. Vincent, just like all his other surgeries. Other than his surgeon, the cardiologists and other doctors are the same team he's had for years.
Surgery is scheduled for Thursday, May 31. The day before will be spent in preop appointments, getting bloodwork, xrays, and other testing done, and getting reacquainted with our former second home. Hopefully we're not there as long as we have been in the past! We've been told to expect 2-3 days in the hospital (mentally I'm preparing for a week!). He'll have sternal precautions after surgery. That means there will be activities or movements Eli can't do in order to allow his broken sternum to heal from surgery. Usually for kids, that's 6 weeks, but the healing time for the sternum increases with each surgery. This being the fifth time Eli's sternum is opened, we've been told to expect 8-10 weeks. That will be the entire summer and possibly into the next school year. We've already made plans with his PT and OT teams for the therapy he'll need all summer to get him back to his normal activity level.
I don't know much about the pacemaker itself, we'll find out more about it in our preop appointments. I don't know what settings Dr. Steinberg will use for Eli. He doesn't know either! That will be determined after the pacer is placed and we see how Eli reacts with different rates. Eli is not used to a heart rate over 80 since he was 11 months old!