So yesterday we spent alot of the day going back and forth between cardiology. So much to take in. So much.
Rhett is in 2nd degree heart block. We know this. They have added some drugs to his list of things that he already takes. It seems to be helping. Which is what we want. Medication vs Surgery is always a much better route.
I know that eventually he will have to have a pacemaker. I know that more than likely he is going to need a mitral valve replacement.
It doesn't mean that I have to like it.
I guess the good thing about all of this, is that we know about it, and it's not something that is all of the sudden going to become an acute illness that has to be done **NOW**.
We can prepare for it, and know that it is coming in the future. We just don't know how far in the future it will be.
However after looking at chest xrays, bloodwork, and EKG's Rhett's cardiologist has a new worry. He thinks that there is either a narrowing of the coronary artery, or there is, and I don't know if I am explaining it right or not, but he thinks there could be something that is squishing the coronary artery as Rhett exercises, (plays, runs around, acts like a wild banshee).
So we have an appointment at the end of the month, and will go over everything again. Run EKG's , bloodwork, and chest xrays. We will also be doing and Echo.
Then, and this is what scares me, they want to do a heart cath on him.
I know it sounds stupid that after everything Rhett has been through that I would be afraid of a heart cath.
But would you believe that with all of Rhett's heart issues, he has never had a cath done?
Nope, not one.
I don't like the risks involved, but at the same time we need to know what is going on, and it's also a great time to just go ahead and get an accurate number on his pulmonary pressures for his Pulmonary Hypertension.
You know. Just for good measure.
His medications that he has been on seem to have been working well for his pulmonary pressures. His chest xrays show that his heart is not super enlarged as it has been in the past. Which is great.
It's so hard being a heart mom. You get so much information all at once. Then you have to decide what to celebrate and what to be worried about. I don't think we have ever been able to just celebrate anything with Rhett's heart. There has always been the "This is looking great. But...."
I don't like the buts.
I have never quite been on a roller coaster ride such as this one.
However through it all Rhett is a trooper. He is thriving. He is a big boy and has come so far developmentally. He is so much like a typical 3 yr old, and considering all of his battles he has fought, and that he has Down syndrome, he seems to be kicking some serious butt down here.
I truly believe he has a mission, and he is here for a reason. I'm not sure why he has to go through all of these health issues, and I'll be honest I think it sucks for him. His health issues are not a blessing. But Rhett is a blessing. He is an amazing fighter and loves life, living it to the fullest with every single breath he takes.
I think we could all learn alot from this three year old.
3 days ago