Wednesday, February 29, 2012

Echo Update

If you read the last post, you know we've been battling a stomach flu around here.  When Monday morning rolled around, I was pretty sick, so my wonderful husband took the day off work.  He was starting to feel bad himself, but he took Eli to Evansville for the echo and appointment with Dr. Kumbar.

Eli did well during the echo.  They only had to stop once because of fussing (I didn't ask, but I assumed it was Eli fussing and not Bryan).  Bryan said it helped that Eli watched Elmo's World while it was being done...thank goodness for puppets :)

Once at the appointment, an EKG was done.  That showed his rhythm is still junctional.  At this point, we don't expect his rhythm to change on its own, but we just keep hoping.  In a way, I'm happy to know that it's consistently been junctional and isn't changing from one rhythm to another.  That would be very rough on him. 

Since Eli has tolerated the junctional rhythm so well, Dr. Kumbar wants to restart him on Captopril.  That's a medicine to help increase his heart function.  He took it regularly after his first heart surgery, but stopped after the second one because of the rhythm.  He's done well since being off of it, but it's time for him to resume.  He needs the extra help. 

Dr. Kumbar said there were a couple things to watch on the echo, but these are things that have been seen previously and we were already watching.  One of those things is his mitral valve (valve between the left atrium and left ventricle) is leaking.  Again, this is something we already knew and will continue to monitor.

The big news of the day was his oxygen was 94%!  I don't know if it's ever been that high!  He usually hovers in the low to mid 80s.  Obviously, he wasn't sporting any bluish lips or fingers when that level was taken!

Overall, she's very pleased and Eli will go back to see Dr. Steinberg in June.  He's the one who will ultimately make the decision about when to proceed with a pacemaker and third surgery (Fontane completion). 

I've never missed any of Eli's doctor appointments or tests before.  Even though he was with his daddy, I hated not being with them and getting to hear the news myself.  Some of that is the nurse in me, but mostly it's the mommy. 

I think the four of us are on the mend.  Bryan stayed home today too.  He was feeling pretty bad by the time they got back from Evansville.  His stomach is better tonight, but just feels dizzy at times and has no energy.  That pretty much sums it up for all of us.  We can eat, but don't really want to (that's NOT normal for any of us!). 

Eli goes to Dr. Amy's this Friday for his Synagis injection.  If you're not familiar with that, it's a vaccination against RSV (Respiratory Syncytial Virus), a virus that is very dangerous for babies but especially ones who were premature or have other health issues.  It's a very expensive medicine, but well worth it when you compare it to the cost of a hospitalization or the risk of death because of RSV.  Last month we paid $4500 for his monthly dose (he's big enough now that he requires two vials...yea?).  This month, we've met his deductible and only had to pay $50!  Even better news is that he's approved for 3 more this season.  We thought he would only be approved through this month, so we're relieved.

Thanks for all the prayers and support since my last post.  We know everyone is dealing with a lot of issues of their own, and the fact that people continue reaching out to us is very touching.  I usually end these with a request for prayers, but this time I want you to know that I'm praying for you.  My prayer is one of thanks for caring about our family, for peace in your own lives, and that any struggles you're having are relieved.  Again, thanks for reading. 

1 comment:

  1. I'm just reading this today, have been traveling and haven't been on the computer. What a great sat reading, 94 is amazing! Glad to hear Eli is doing well. Caleb goes for a check-up in 4 weeks, he seems to be doing pretty well. I do want to talk soon! :)