Friday, June 5, 2009

And In Other News.....

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.

11 comments:

stephanie said...

I wish you had different news,I hate to think Rhett has to go through any thing else, it breaks my heart... not to mention yours of course. Your posts about Rhett are always so filled with life and spunk,he's a take the bull by the horns type of guy. As always keeping Rhett in my prayers.

Niksmom said...

Oy-freaking-Vey! I totally understand what you're going through. We went through so much of this kind of stuff when Nik was still itty bitty in the NICU. He had a cath with a balloon valvuloplasty to, literally, tear open his pulmonary valve. No matter that we had the best guys around doing the procedure, it was scary as all get out.

Please continue to keep us posted and let us know when the cath is scheduled. Will conitnue to keep Rhett and you all in my prayers and send good thoughts your way. xo

Amie said...

I understand your concern for having a heart cath. Brody had one balloon cath to open his pulmonary valve and also had a couple just to scope things out. As far as procedures go, I found this to be one of the easiest. Frightening? Yes. For sure. But rest assured that this procedure is not nearly as bad as it sounds. I'm sure Rhet will pull through like a champ.

--Amie Harwood

Lacey said...

Rhett has never had a cath? I know everything is scary with these kids, but its really not bad. One night in the hospital, trying to keep that banchee's legs straight so they don't bleed. I promise, its not bad.

ShaRhonda said...

Keeping Rhett in my thought and prayers and You in my prayers for comfort and peace.

Tina:0) said...

Sorry to hear that Rhett has to endure yet another procedure. But let me tell you from experience, heart cath's are nothing (LoL)! Yeah, its a "being put under anesthesia, possibly intubated, stinky surgical procedure" but Vaeh's haven't been that bad. And I would much rather go through one of them instead of an OHS!!

Praying that the cath gives the docs the answers they need!

PS - what med is he on for the PH? Vaeh's on revatio... & it seems to be doing the trick for her!

Tina:0) said...

Oh, forgot to mention... Vaeh's had 6 caths total. Three of those were balloon angioplasties, the others more of a diagnostic purpose. Although they did coil off a "left over" collateral artery. The "nice" thing (if there is one) is that the recovery time from a cath is WAY shorter than an OHS!!

Sending hugs!!

Holly said...

I'm sorry your son is going through all of this, it must be very difficult! :(

Stephanie said...

Honestly, heart cath is the easy part. But don't be surprised if with the scarring he has, that they have to go through the neck.

Michelle said...

I know what you mean...it is so hard to live with the "buts..." As always, keeping your little fighter in prayer. "Fighter" is the operative word, honey. Rhett rocks! Still wish you were next door! Someday! xo

Stephanie said...

So sorry that you are having to deal with all this now. It's always scary to intubate a kid with PH but I hope the docs get all kinds of good information from the cath. Keep on truckin'.

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