Thursday, January 20, 2011

Breathe in, breathe out.

I'm tired. Ethan has been sick since he woke up yesterday morning ... high fever, lots of snot, and just in an overall really bad mood. I took him to see the pediatrician yesterday after his fever continued to creep up, even after alternating Tylenol and Motrin. She was able to rule out strep and the flu, but he does have pink eye.

Pink eye?? How in the heck did that happen?!

The snot and fever, though? Just a virus. I have mixed feelings about these stupid viruses. On one hand, I'm glad there's no infection but, on the other hand, I really want to give him something that will take it all away. At this point, he is absolutely dependent on a pain reliever/fever reducer every 3 hours to keep him happy.

Enough of my whining, though. I'm sure y'all are really reading to see how today's appointment went.

I will start off by saying what I've been trying to tell myself since we left the office this afternoon: overall, it was a good appointment. Overall, it was a good appointment. Overall, it was a good appointment.

Thank you for your thoughts and prayers. Despite being sick, Ethan did surprisingly well with the various tests. Although, they should probably just forget about getting a blood pressure reading until he's at least seven; he HATES that cuff! With a little Elmo, and some reassurance that nothing they did today would hurt, he laid perfectly still as Dr. I interrogated his pacemaker, Mrs. Cathy ran an EKG, and Mrs. Lindsey took pictures of his heart. He really was a model patient!

A note about his weight: yesterday he weighed 25 pounds and 5 ounces, wearing just a (mostly dry) diaper. Today, he was 24 pounds, 11 ounces (completely naked). So, you know what? I'm done obsessing about it. He's gaining slowly and that's all that matters. When his cardiologist can look me in the eye and say, "I'm not worried, are you?" I think Somebody's telling me it's time to let go.

So, onto the results from today. As I typed out my last post with the specific prayer requests for today's appointment, I had the fleeting thought, "What if God chooses to not answer any of these? Will I still believe that He is mighty to save and is rejoicing over my son?" The short answer is yes. I don't have the energy or brain-power to go into the long answer right now.

The good news? Ethan's pacemaker is doing its job beautifully. The settings are optimal and it still has about 2.5 years of battery life left. The not-so-good news? In Dr. I's words, "the pacemaker will outlive the conduit." (Read: Ethan will need another heart surgery sometime between now and 2.5 years from now.)

Breathe in. Breathe out. Repeat.

The pressure where the conduit meets the pulmonary artery has climbed to 75-80 mmHG. That's a difference of 20 mmHG in a little over four months. We were all taken aback by these results, Dr. I included. Unfortunately, the spot where this narrowing (what's causing the high pressure) is taking place can really only be fixed by replacing the entire conduit. The folks in the cath lab have been unsuccessful in the past at ballooning or stenting open that spot; it's just in a really tricky position.

So, instead of all looking well and us coming back in six months, we've been demoted. Dr. I wants to see Ethan back in half that time. He'll take another look at this heart, via echo, in April and we'll go from there. He did say that when the number enters into the 90's, it will be "go-time", so to speak. At the rate the pressure rose between September and today, we very well may be going back into the OR this spring/early summer.

Just keep breathing.

It is our reality that Ethan will face heart surgeries for the rest of his life. However, knowing that doesn't make it any easier to accept. It's like when someone passes away and you ask, "was it expected?" Does it matter?! We completely expected Ethan to need another heart surgery before his 4th birthday; does that make laying him on an operating table a year or two shy of that mark OK? No!

Already, I'm trying to think of all the reasons why it would be "OK" for Ethan to have surgery sooner, rather than later. Already, I'm trying to take over some sort of control of the situation. I have already confessed these messed up thoughts I'm having, though, and I am still trusting God to be what He says He is.

I really don't think He thinks this is OK, either.


mossfamily said...

Your faith in God is commendable. He will see you through all this & will most certainly see Ethan through. I am sure it is never easy to watch your child go into an OR, whether you were expecting it in 3 months or 3 years. I will keep you all in my prayers! I am sorry that you did not get the results you were expecting, though and that Ethan has a nasty virus. I am skeptical of those "virus'" too. Just how do they know that?? I prefer the drugs to cope, in all honesty! lol!

Jen Foster said...

Big hugs to you. Wish I had wise words but sometimes all I've got is a hug from someone who understands the hurricane of emotions spinning around you.

Kelly said...

Oh Joye...I'm sorry you didn't get great news today. I have been praying for Ethan and thinking about you guys. I totally understand about that 'tricky' spot of narrowing. As you know, Jack's is in the same place (very top of the conduit and the right and left PA - also where it it attaches) and it really stinks. Our cath doc has not been able to balloon that particular area successfully either.
I will continue to pray for Ethan and for you all. Never met you but sending you a big hug from a fellow heart mom who gets the emotional roller coaster you are on.
Kelly (Jack's mom - ToF, PA)

Jenny Lincoln said...

Oh Joye.. I know EXACTLY how you are feeling. (You know that- you saw my blog post. :) ) Thoughts and prayers for your family as surgery comes closer. It's never an easy thought but as heart moms we do what we have to, don't we? :(

Tara said...

I too know exactly how you feel...Liam needed a new conduit only 6 months after he got his first...Talk about fast. Crazy, I was naive to think once it was in, we had the 5-6 years before a new one was needed. Although, looking back, I am hoping to not have to take a 3 or 4 year old into a surgery. Hopefully now we can wait until he is 7 or 8 before a replacement, when at least he will be old enough to understand. God's plan for all of us has purpose, even though it's a hard road sometimes. Hugs and many prayers that you have lots of TIME!!

The Smith's said...

Your example of continually coming back to the Lord for HIS strength is so encouraging to me (and I'm sure many others!) Ethan is one lucky little boy!

Jenn said...

Joye, I am so sorry. You're so right; expected or not, your baby going into surgery is just a hard thing to deal with. And it's even tougher since Ethan doesn't fit neatly into a particular CHD box with a standard treatment. You and Jeramie have had lots of curve balls thrown at you since E was born, and you guys have continued to trust God, even if it was in the midst of screaming at Him. You have been faithful, and God promises that He will always be faithful to us. I am praying for you all, as always. Love you!

Stefenie said...

{{{HUG}}} Oh how I wish that someone would just hurry up already and come up with a better solution for kiddos like ours that need surgery after surgery. It's just not fair.

I will be keeping you all close in my prayers in the coming months for Ethan to remain stable and for surgery to hold off a tad.

If you need to chat you know where to find me. Always here for you dear friend!!

Jen said...

Wow, this sounds all too familiar! The narrowing, the high pressure, etc. It all just plain stinks! We have certainly been to appointments that we thought were going to be routine, and left with a huge cloud over our heads. I know exactly how it feels. The not knowing, and living day by day is such a hard thing. It has taken me so long to adjust to this as part of my life, because I am such a planner (I suspect you are too!) :) We've been playing the "waiting game" for about 2 years now. As you know, our time has finally come. Yours will too, and when it does, you'll get through it. We're all here for each other- it is so wonderful to be connected to such a great support system of heart mommies! :) We'll be praying for Ethan!


Jen said...

P.S. I forgot to mention this- have you invested in the movie "Elmo Visits the Doctor?" It saved us at most all of Andrew's appointments! He used to scream and never cooperate, but once we got that movie, he watched it over and over and I talked to him about it. The next time we went, he sat right up and let the doctor do anything to him! Ha! It is a life saver. You might have to get it on Amazon cause I don't know if stores sell it now. We got it on Amazon. :) Just an FYI! :)

Carolina Carters said...

Hugs, friend! I don't know what else to day. I completely understand your feelings and wish I could say something to make it all better...

Praying for you (and for Ethan, of course)!

Michelle said...

Wow makes me so sad to see how much his conduit gradient pressure changed in just 4 months. Alexa will be getting her's checked the end of April, just a couple weeks before my due date ~ and I want good news! She also has a pacemaker they just checked out last week. I hope Ethan's numbers stay below the mark for you. This is so hard. =( Alexa also ended up with bad pink eye this past week.

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