Well, a year and a half ago I published about Eli's first day of kindergarten. Then life happened and I chose to live in it instead of documenting so much of it. I wish I had blogged more, but by not blogging, I did get more sleep and playtime with the kids!
Eli has some things coming up and I thought it was time to update here. Two years ago we saw Dr. Steinberg who is one of Eli's cardiologists. Basically he is Eli's pacemaker doctor. Now Eli does not have a pacemaker, but he did at one time. Because of the staph infection he acquired, the pacer had to be removed which fortunately was an option for Eli. Without the pacemaker, Eli's baseline rhythm is called a junctional rhythm. I won't get into all the details of it, but in layman's terms, it basically means his heart rate is much lower than that of a heart healthy seven year old (yes, he's seven now!!!). Eli's average heart rate is 58 beats per minute, but can go much lower. For example, when he's sleeping he will drop to the upper 30s. Those are low numbers for an adult, but especially for a kiddo Eli's age. However, Eli has always tolerated that rhythm pretty well so as long as he's asymptomatic, we just let him go. Because he's done so well with it, Dr. Steinberg said for Eli to continue follow ups with his regular cardiologist (Dr. Kumbar) every six months and not to see him again for two years.
So we've seen Dr. Kumbar every six months. Once a year Eli wears a Holter monitor for 24 hours (like an EKG that shows his heart rhythm for a full day) and he has an echocardiogram (an ultrasound of the heart that shows the vessels, chambers, Fontan structure, and blood flow). Our most recent appointment was the middle of January and it was with Drs. Kumbar and Steinberg since it had been two years. Eli's echo looked pretty good. Dr. Kumbar said it was essentially unchanged from the year before (which had very few changes from the year prior to that). So structurally his heart is in pretty good shape (for a kiddo with his type of defects).
However, the Holter monitor showed a different story. Eli's baseline heart rhythm is still that junctional rhythm. But now he's having some runs of a different rhythm. Previous Holters showed that too, but it was just two or three beats here and there. This Holter showed he's sustaining that rhythm for 2-3 minutes and it's happening a couple times a day. They're saying this rhythm is an atrial tachycardia, which just means a fast heart rate initiating from the atrial part of the heart (upper chambers) instead of the area it's supposed to come from. When he's in this rhythm, his heart rate is around 200 beats per minute. The good news is that Eli doesn't show any physical signs of going into or out of this rhythm. However, it's not a good rhythm to be in and we can't expect him to stay symptom-free from it. And it's also not good for him to slip into and out of that rhythm. It's too much stress on his already stressed heart.
Long story short, we are likely looking at Eli having the pacemaker placed again. Before going that route, Dr. Steinberg wants to try to control it with medicine first. If we can do something simple to control it, of course we need to go with that. So Eli is now on a beta blocker once a day. He's been on it for a week at a low dose. The goal is for him to be on it at this dose for two weeks then double it. After two weeks on that dose, then add another half dose to reach the maximum dose for his weight. The reason he's being slowly acclimated to this is because the medicine has the potential to lower his already low heart rate. His average is 58, with this medicine it could easily be lower than that. He may or may not tolerate an average rate lower than what he's already at. So while on this medicine we have to watch him very closely to see how it is affecting him. Because he's at school most of the day, we've had to add to the workload of his teacher and school nurse to make sure they're aware of what's going on with him and have them help us watch for symptoms. What symptoms? Most likely it would be excessive tiredness. His low heart rate would not provide enough blood flow to keep his energy level up.
After six weeks, he will have another Holter monitor to see if there's any change to his rhythm. If he has any trouble adjusting to the increased in medication, then the Holter will be done sooner. If Eli doesn't tolerate this beta blocker, Dr. Steinberg said there is another medication he could try. It's a lot stronger and to start it, Eli would be hospitalized to closely monitor him as he has the first few doses. We're hopeful these medications can help him, but realistically we know he will require a pacemaker again at some point. We'd just like to keep pushing that off as long as we can, but will do it whenever Eli needs it. One benefit of having the pacemaker is that Eli wouldn't have to do the Holter monitor anymore. The pacemaker would record everything and the doctors could read the reports from that instead of having additional testing.
In slightly unrelated news, Eli is having some dental work done tomorrow (Monday). Peyton Manning Children's Hospital doesn't have a pediatric dentistry department, so we are going to Riley. Eli has a large cavity that has to be taken care of soon. In addition, he has a couple smaller ones and needs some sealants. The doctor feels like it's possible to get it all done as an outpatient with nitrous oxide (laughing gas) and cardiology has okayed the plan. If he requires anything more than the gas, he will need to be hospitalized and have the work done under sedation. The plan is to get it all done as an outpatient tomorrow, but it could change depending on his cooperation level and if she finds any other work that needs to be done more invasively.
As usual, thank you for your prayers and support. Eli is a happy first grader who is learning to read. He's doing pretty well in school although it takes a lot of patience to get him through! Our family recently moved (just last weekend! I really need to blog about that!) and we are beginning to get settled in our new home. Eli is playing YMCA basketball this season and his first game is next Saturday. He is very excited for it and is also excited for baseball this spring. He still loves sports! He's recently developed a love of video games too. We're seeing that as a good thing as he has to use Lefty some to use the controller. He gets very animated during his video games (usually basketball, football, or hockey games) and is funny to watch.
I promise to not wait so long between posts. Thankfully we've not had anything major to update regarding his health until now. Thank you for following along and caring about us!
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Not a great picture, but it's the last photo of us in our old house. It was the morning of the move and everyone had to crowd into our bed....yes, Pablo is still an important part of our life!
Getting his vital signs before his echo. You see the blood pressure cuff on his left arm. His hands were cold so we had trouble getting an accurate pulse ox. She used one that went on his ear to get a better reading. If you look at the box, it's showing Eli's pulse ox of 90% and a heart rate of 59. Both those numbers are pretty average for him.
This was toward the end of the echo. Eli's Fontan circulation isn't just 'at his heart' as many would think. It involves vessels going to his lungs and the tech has to get up under his neck to get all the images the doctors need.
After Eli's initial dental consult a few weeks ago, we visited the Pacers Pro Shop. While there, we found a deal on this outfit and had to get it. We got the same deal on a cheerleader outfit for Charlotte and they each got a new Pacer basketball. Eli is extremely proud of his new outfit and wants to wear it all the time.
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