Thursday, April 21, 2011


Thank you for your prayers for sweet Charlotte. She came through surgery wonderfully yesterday, and looks absolutely fantastic today! I was able to see her for a little bit this afternoon, and spent some time talking with her refreshing-for-the-soul Mama.

Pink smiles for pink Charlotte!

All in all, it was a good day.

Backing up a few hours, we started out the morning with Ethan's cardiology check-up. Let's start with the good...

He behaved so well. I talked about this appointment until I was sick of hearing my own voice, but I really think it helped! And, I'll tell you what; by the time we walked into Dr. I's office today, Ethan knew who would be putting stickers where and how many there would be. Too bad Dr. I's nurse was out, and he didn't need a 12-lead EKG after all. Oh well. I guess we'll just be super-prepared for next time.

The blood pressure cuff was the only thing that caused a complete meltdown, although they were able to get a reading this time. Albeit, high, but a reading nonetheless. I couldn't believe it as Ethan held out his index finger for the PulseOx, and sat perfectly still while Dr. I interrogated his pacemaker. It was an answer to prayer, for sure, and even more proof that my baby is really growing up!

Ethan's growth was also a topic of good news today. He has gained two pounds and grown an inch and a half in three months! Dr. I has always been in our corner with giving Ethan time to settle on his own curve, and I think he felt good about looking at his growth chart this morning and saying, "I knew it."

Fun fact about the gown Ethan is wearing: this is the hospital gown I wore on the day my sister was born. It's 25 years old!!

Ethan's heart function looks great, as well. This could have been questionable, given the not-so-good news we received, but his heart is squeezing nicely and that's always a plus!

The conduit, however, did not earn good marks. It appears that we have entered into "go-time", as the pressure gradient across the conduit, at the insertion point, measured a whopping 116 mmHg. This is not good; not good at all. (Remember, less than 20 is normal/ideal.) Dr. I is going to present Ethan's case to the Peds Cardiac Surgical Conference in a couple of weeks and come up with a plan.

This plan could involve sending Ethan back to the cath lab to see if the high pressure is caused by an obstruction in the conduit that can be ballooned open. The more likely scenario is that surgery will be needed to replace the conduit altogether. If that is the case, everyone will agree that it should be done before the fall (AKA cold and flu season), so he could be going back into the operating room sometime this summer.

We left the appointment kind of like you leave the car dealership. Three months, or three thousand miles ... whichever comes first. In our case, we'll go back to see Dr. I in mid-July, or we'll have a plan for surgery before then.

Oh, and Ethan's also hooked up to a Holter monitor for 24 hours. During the pacemaker interrogation, Dr. I noticed that his atria seemed to be functioning in some sort of atrial arrhythmia. It seemed innocent enough, but he wanted to monitor Ethan for 24 hours just to make sure. If Ethan's top chambers are entering into some sort of irregular beat, he's not showing any evidence of it, which is encouraging. I'm hoping the results will even be read-able. Trying to keep six leads, and a bulky monitor, strapped to a two-year old is not easy!

Walking out of Dr. I's office, Holter case in hand.

Have you ever seen such a crazy night time get-up?!

I'm feeling pretty good about everything. We know that Ethan will require multiple conduit replacements and, while we would like to have a little more time between surgeries, there's not much we can do about that.

I was reminded today of one of God's many names, El Roi, the one who sees (Genesis 16:13). How comforting to know that He watches over us, knows the numbers of hairs on our heads, and leads us through the deserts of life. I will choose to rest in this as we await "the plan" ... the plan He already knows, after all.

"From heaven, the Lord looks down and sees all mankind; from His dwelling place He watches all who live on the Earth - He who forms the hearts of all, who considers everything they do."
-Psalm 33:13-15


Jen said...

I'm happy to hear the good news from Ethan's appointment. I'm sorry it still looks like surgery is coming soon. Believe me, I know the feeling! Sounds like your are relying on God and He is sending you peace. That is the amazing strength that gets us heart moms through these tough times. Will certainly be praying for you guys in the coming months. The sleeping picture cracked me up! Haha!

Jen, Craig & Andrew

Jen F. said...

So proud of my little sandbox lovin' buddy! Glad he did great and glad the news was about what you expected.

We did the Holter recently, and it was NOT popular. But sending him to grandma's house was a pretty effective distraction!

Anonymous said...

He looks so grown up walking out of the doctors office!

Thank you for the update, any questions we may have had were answered here.

I really appreciate the call after the appointment. I never want to ask to many questions even if I have them when you guys come straight out of the appointment.

I knew I would get any answers I may have had when you posted about Ethan's appointment.

I am glad he was a good boy during the appointment, he is always a good boy when he comes to visit Grandma and Paw Paw.

I am also glad that Charlotte came through her surgery and looks great.

Love all the pictures you posted here.

God is good and I know he has a wonderful plan for Ethan, you and Jeramie.

Love you guys,
Grandma A.

Stefenie said...

I am sorry Joye that the "S" word has been mentioned. It is never easy when you hear that even when you had a feeling that was going to come out of the appointment ahead of time!

Maybe they will be able to balloon his conduit like they did Logan's and buy him some more time! Praying for all of you!!

Michelle said...

Hi Joye, I'm glad all your preperation with Ethan paid off during his appoitnment! He does look so cute and like a big boy walking out with his holter monitor - hope they don't find anything funky going on. And sorry about the conduit reading. It's just so scary how we never now how soon those numbers will change. I also hope they are able to balloon the area and buy you more time. I feel like I've learned to live in 6 month increments lately - although that could also change. Keeping you in my thoughts and prayers.

Tara said...

Sorry to hear another surgery may be needed soon...I know those pressures keep us on the edge, don't they?? Prayers for you guys for the upcoming months!

Kelly said...

Hi Joye, Sorry to hear that it looks like it is just abut surgery-time. Even though so many of us go into those appointments dreading those words, it is a reality, and the positive tone of your post is very inspiring. Hopefully, they will be able to get the pressures down enough during his cath and buy Ethan some more time.
Thinking lot's about Ethan...
Kelly (Jack's mom)

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