26 March 2012

At the End of the Day

It always seems to be so late by the time I get around to these updates . . . where does the time go? And apologies for leaving most of you hanging without much of an explanation in my previous entry. There really is no letting up these days . . .

So Eddie is doing ok after his procedure this afternoon. It was all a bit of a surprise for us since we had no idea he would be going into the operating room for the PICC line insertion. Since his central line was in his groin and thus much more susceptible to infection, we knew from the beginning we would need a more secure PICC line in his chest. However, with all of his ECMO and Berlin Heart excitement, the PICC line kept getting deprioritized (rightly so).

We discovered this morning that the IR team (Interventional Radiology) was taking Eddie to their operating room and he would need to be anesthetized for the duration. After enduring yet another discussion of risks for this procedure and signing the consent forms, Eddie rolled away. This time, however, we were allowed to tag along all the way to the OR . . . and Sarah even got to ride on the bed reading stories to Eddie.

When we arrived at the operating room, it looked something like the picture below. Basically, by using a combination of ultrasound and fluoroscopy, the doctors are able to get real-time, living images from multiple vantage points. Pretty amazing.

After a little more than an hour, the nurses brought Eddie back to the room for his daily dressing change and echocardiogram. There really is a lot of choreography that goes on in a hospital since everyone would prefer to minimize the number of times Eddie needs to be sedated, anesthetized, or otherwise drugged.

On the topic of sedation, Eddie has been receiving a continuous infusion of anti-anxiety and pain medications since he was admitted to the ICU three weeks ago. We are currently in the process of weaning him, but it will probably take two weeks until he can come off completely. Goal of moving so slowly is to avoid any withdrawal complications. While he has been a bit more lucid each day, we are happy to take this process step by step and are in no rush.

A final bit of good news . . . we heard Eddie's first real laugh in three weeks this morning. He was smiling quite a bit and really loved having Sarah in his bed reading to him. We are hoping he can rest up tonight and recover from today's operation so he can pass his "swallow" test tomorrow. If he does, he'll finally get some of the apple juice he has been begging for the past few weeks. Fingers crossed!


  1. You are a great writer John any hour and I can imagine the time flies each day for you all! Such a strong group you Harpers are, so happy you got some laughs out of Eddie, praying hard for a new heart!
    The Townsends

  2. So Happy to hear that Eddie was enjoying the story! How I remember the swallow test! GOOD LUCK EDDIE! We are so grateful for the wonderful parents and the story time that holds so much interest for Eddie. Hang in there Eddie, good luck on having a great night. Sleep in in the morning and have a great day. We're all Praying for you all. Very Thankful that he has held up so well. He looks like the Eddie we know in the pictures in spite of his very hard time. Thanks so much for the Update, We Love You All!

    "Grandpa D"

  3. So glad to hear that all went well today with the surgery.....and how great to hear him laugh as well! As always, thanks for the updates, they are great. In case you can't feel all the love and support for your family, just the number of hits to this blog each day should tell you how many people are concerned for your family and praying for you! Here's to hoping you all are able to sleep a bit tonight--especially Sarah in Eddie's room :)

  4. Laughing!:) What a nice post to read this morning. So glad to hear that all went well. Praying for some peace and calm and apple juice! Hope the next couple of weeks go well as Eddie weans from the meds. Continually thinking of you all. Loves!

  5. Love to see Eddie's EYES open! Super cute to see photos of Sarah reading and so glad to hear that you got a laugh - too precious for sure =)

  6. We are so grateful for your updates! Thank you for taking the time to share with us. My little girls and I continue to pray for his health. So glad to see how brave he is!

  7. You two are handling all of these situations with such grace and faith. I am in awe of your strength. I love you both. Eddie is lucky to have such amazing parents!