Once Upon A Prayer

Friday, July 20, 2012

Day 8 - Lily Sets the Pace

As I sit here to type this blog post, part of me cannot believe that Lily is still actually in the Cardiac Intensive Care Unit.  When I spoke to the surgeon last Thursday, he warned me that about 3% of children who receive a normal Fontan Procedure, and about 5% of children who are like Lily with a very complicated heart, end up having severe complications post surgery.

 Lily's heart is still going into a Junctional rhythm quite frequently.  The doctor explained it to us by saying that a heart in sinus (normal) rhythm will squeeze from the top and then squeeze from the bottom in a rhythmic pattern.  Lily's heart is squeezing from the middle, and then squeezing from the bottom.  Ever since her surgery, the doctors have been putting Lily on and off of a pacemaker.  Today, one of the doctors became insistent that Lily be left on the pacer for an entire 24 hours to see how she responds.  After about 12 hours of constant pacing, I must say that Lily seemed to do much better overall.  She had more awake time, ate some food, talked to Mommy and Papa, hid from the nurses when they came in the room, as well as was very quick to tell them, "Ba bye" and "Later" as soon as she wanted them to leave.  My unprofessional opinion is that Lily's heart likes the pacer.  The team of cardiologist's discussed her case today, and decided to begin her on a medication to lower her blood pressure to see if that takes some pressure off of her heart, and allows it to beat in a sinus rhythm. 

"Maybe if I don't see you,
you can't see me!?"

Lily is still battling her collapsed right lung.  She receives physical therapy three times a day to get her out of bed and moving, as well as several sessions with the Respiratory Therapist where they beat on her back with "cups" in order to break up the gunk in her lungs.  Throughout the day, the nurses program Lily's bed to rhythmically inflate and deflate, which pounds on her chest as well.  Lily is still on the oxygen cannula, and requires it to be at 100% in order to maintain a comfortable oxygen saturation.

A few other causes for concern are that Lily's sodium level is extremely low.  After forcing her to take 3 teaspoons of sodium three times a day, which she would promptly throw up, Papa brought a couple packs of Ramen Noodles and Soy sauce to see if that would do the trick.  Lily did a great job eating lunch, and her sodium level raised slightly.  However, we took a few steps backward after dinner when she threw up her meal.  Lily is also receiving potassium throughout the day, as well as IV fluids in order to maintain the adequate volume that her body seems to require at this point in time.  Of course that means that our Little Miss is carrying around 6 lbs of excess fluid in the body that makes her feel pretty lousy.  Our sweet girl often tells me that she has owies in her eyes from all of the fluid pressure.

So, what does all of this mean?  It means that Lily has won herself an extended stay in the Cardiac ICU!  We will take each day as it comes, and celebrate the small victories along the way.

Like Mommy and Papa being able to hold their baby again.


  1. I'm sure Lilly is comforted to be in her parents' arms. Praying for her and for you two, also.

  2. Praying that Lily will soon enjoy wagon rides again a be smiling. It's tough to see a child hurt.

  3. We are hoping that she.comes.home.soon and be a little girl we know and come back to church and become a child.again rhatvonce was.active and playful. we r praying for.her very day.

  4. still praying for sweet Lily, her Papa and Mommy!