Thursday, June 28, 2012

Update from Eli's Cardiology Appointment

Let me start by saying Eli is now 20 months old!!!!  I can't believe he'll be 2 in a few months.  Why does time have to go soooo quickly?!?!  Happy 20 months, baby boy :)

We saw Dr. Parikh today.  He's Eli's main cardiologist in Indy.  Our original appointment was to be last Friday in Evansville with Dr. Steinberg, who's also one of his Indy cardiologists but travels to Evansville four times a year.  His schedule changed so we had the opportunity to go to Indy & see Dr. Parikh again. 

We had been worried because we'd seen several subtle changes in Eli over the past couple months.  He gets blue around his mouth, tip of his nose, fingers and feet more often.  It's something that used to happen a few times a week and we're now seeing it multiple times a day.  His breathing is fine and he doesn't seem bothered by it which is good, but the blueness just shows his body is stressed.  He gets tired more easily and is napping more through the day.  His appetite is still very good but his weight gain had tapered for a while.  This could be because of his increased physical activity (he is a busy-body toddler, you know!).  It could be that his heart function is decreasing and requires more calories to do its work.  It could also be that he's just a growing boy and takes after his brother who ate 6 pancakes and two helpings of scrambled eggs for lunch yesterday.  I also have to remember that most little ones aren't weighed every 2-4 weeks like he is so we can't stress everytime he's weighed.

Eli usually cries and fusses once we get in a doctor's office but he was REALLY good today.  They weighed him (22lbs 14oz), measured him, took his oxygen saturation (73%, low but they weren't alarmed), his blood pressure, and did an EKG.  The EKG usually sets him off as soon as he sees the machine but he didn't fuss at all.  I don't know what was different with him today but I'm grateful for it!  Dr. Parikh came in & we talked for a while then he examined Eli (no tears with that either).  Later he performed an echocardiogram on Eli and he started crying at the beginning, calmed down as the tech in the room started doing the Hot Dog Dance from Mickey Mouse Clubhouse (this was a man older than me and it was comical), started getting fussy again toward the end, and by the time Dr. Parikh was finishing he was screaming enough that it confirmed we had the right baby at the appointment.  He stopped as soon as it was over and slapped five with the tech.  Dr. Steinberg was in the office too and he & Dr. Parikh discussed the echo results and both of them came in to talk to me. 

The summation of today's appointment is this:  yes, we're seeing these changes in Eli but there's not much to do about it at this point (and that's okay).  All these changes are to be expected with his condition.  They don't normally do the Fontane Completion (FC) until the child is close to 30 pounds.  They just get better results by waiting until the child's body is bigger and adjusts to the changes the surgery causes.  They don't recommend placing a pacemaker now, they want to wait and do that with his FC so they don't have to put him under anesthetic & open up his chest more than necessary. 

We go back to Indy in August for Dr. Parikh to do a cardiac catheterization (views of the heart from inside the heart and also takes pressure readings from areas within the heart).  We're now thinking that his FC and pacemaker placement will likely be in the first 3-6 months of 2013.  If the catheterization shows any need to move up that timeline, we can.  Until then we just deal with the changes and update the doctors as necessary. 

I feel so much better after today's appointment.  My fears were that he needed surgery or a pacemaker very soon or that I would be treated like I was making a big deal out of nothing.  Let me say that throughout this entire time NO ONE has ever made us feel inadequate or dumb, but it's always a fear in the back of my mind when one of my main issues is that "he's not his normal self."  Today I felt like they he was thoroughly examined and each concern was taken very seriously (as they always are).  I feel completely validated.  I know it sounds strange to say we're not going to do anything despite him having these issues, but he's not ready for the next stage.  We're grateful for that. 

I feel I need to pass on something that's been said to us many times by several different doctors over the past 18 months.  Obviously Eli has a very serious heart condition, but so do a lot of other children.  Overall Eli's progress is leaps and bounds better than the average heart baby.  That's wonderful, but it also makes it that much harder for us when we start seeing some of these minor changes that are expected with his condition.  It's just something we need to remember, but also balance it with knowing what's a big deal and when to really worry.  We're so fortunate we have such amazing physicians to help us through this. 

So many of you have continued prayers for us and step it up even more whenever we ask.  Thank you doesn't seem adequate.  We know prayers work, Eli is proof of that.  We're so grateful for your support.

After the appointment we got to see the nurse practitioner in the office.  Sara has been such a source of information and comfort throughout this journey and it was so nice to see her again.  We'd already been there for a couple hours at that point but she was definitely worth spending five more minutes!  She was very pleased with Eli's growth and progress.  It was important to me that we got to say hello to her since we're never up there for our regular check ups. 

My mom and Zachary went with me & Eli today.  Mom & Z waited in the lobby and took several walks while Eli & I were in the appointment.  He was so good too.  I'm so proud of each of my boys after the long trip & hot temps today.  They both had great attitudes all day.  After the appointment we met my sister Ashley for supper.  Then we drove by a house she & Josh have looked at (love it!) and then to her apartment so the boys could burn off some energy and stretch their legs before we made the trip home.  It was a late night but a wonderful day.  Both boys are exhausted.  I am too but I have this happiness and peace inside I've not had in several weeks keeping me up tonight.  I think I'll sleep well pretty soon!

A few final notes before I end this lengthy update.  Bryan & I just celebrated our 13th wedding anniversary.  It's hard to believe we've been Mr & Mrs that long, but it's hard to remember life before we were Mr & Mrs!  We celebrated our anniversary the night before by the four of us going out for pizza.  Eli's gift to us was taking his first unprompted, unassisted steps!  He'd taken a few in his therapy sessions, but that was with lots of prodding, on Tuesday he just decided to do it on his own.  If I ever take time to write in their baby books I will list June 26th as the date of his first steps.  I knew it would eventually happen but was still unprepared for how I'd feel when it did.  My waterworks started immediately and I was very overwhelmed by the emotions of the moment. 

Again, thanks for reading and caring about our family.  Until next time, remember to cherish Every Little Beat.....

1 comment:

  1. Oh Jessica, I feel so happy for you! And I teared up as soon as I read that Eli took his first steps... what an amazing milestone. Eli is such a trooper! I'm thrilled, thrilled, THRILLED for you and for the good appointment yesterday. We'll keep praying for your family!