Monday, August 18, 2014

Post-op Day 3 & 4

Days 3 and 4 have been overwhelmingly volatile.

On Day 3 Zacchaio was either inconsolably screaming in pain, or asleep and constantly awoken by spasms. After increasing his Morphine frequency to every two hours, he found moderate pain control. 
Today on Day 4, he requires no morphine. His whimpers are quieted as I gently hum with my lips softly pressed against his cheek. 

On Day 3 Zacchaio's right eye remained large, bruised, and swollen shut.
Today on Day 4, definition in his eyelid returned.

On Day 3, Zacchaio had a continuous fever that necessitated around the clock IV Tylenol.
Today on Day 4, he has remained without a fever and has been without Tylenol for 14 hours. 

On Day 3 we attempted to give Zacchaio Pedialyte through his NG tube on account of his frequent vomiting of hospital formula. Although his vomiting episodes ceased while on Pedialyte, we found he was still retaining full volumes of fluid in his stomach six hours later. 
Today on Day 4 we began giving him medications to help stimulate motility in his gut. We will try to give him incredibly small (2mL) amounts of his own formula hourly to see if he is more tolerant of a familiar formula. There is no IV equivalent for his anti-arrhythmic medication, therefore maintaining therapeutic blood levels of it has been problematic with his upset stomach. His heart rhythm has become increasingly irregular.

On Day 3 he was still on an IV beta blocker to control his heart rate.
Today on Day 4 he is maintaining a safe rate without any beta-blocking assistance.

On Day 3 he remained lethargic and absent with his eyes persistently closed to us and the world.
Today on Day 4 he briefly opened his eyes, reached for and softly touched my face and in silence managed to say, "Hi mama... I'm still here." He fell back asleep immediately. With every passing day we don't see him, we fear he may not ever come back.

On Day 3 he continued having strange eye movements that the epileptologist said were highly suspicious of seizures. We placed EEG leads and waited.
On Day 4 they confirmed he's still having seizures. 

He's still having seizures. 

I could feel the large hope-filled balloon we came to Cleveland with losing air, and it was losing air so quickly that while we frantically searched for the leak we only kept losing more. Aidan and I found ourselves with wavering endurance for this new life of ours. 

The two of us had the opportunity to go on a 45-minute mini date while Zacchaio was in MRI. Our options were one of two restaurants in the clinic... How's that for romance? The quiet and intimate moment we managed to find felt disappointedly unfamiliar. Though we were enjoying a sit down meal together, somehow we both still missed one another. While we're together during the day we tend to Zacchaio. At night we take turns between staying at his bedside and sleeping at the Ronald McDonald House. The day we get to share a bed together is going to feel like our honeymoon! I'm looking forward to it. 

The current plan is to await MRI results and allow Zacchaio one week of recovery time, as most of his acute swelling will have subsided by then. It is at this point that we will gain a more accurate account of his seizure type and frequency. Following final evaluations we will make the decision as to when Zacchaio will go back into surgery to remove the remaining brain tissue of his right hemisphere, effectively completing the hemispherectomy we came here for.


  1. Go Baby Z - we're rooting for you....

  2. God be with you baby Z

  3. ♡♡♡♡♡♡♡♡♡♡ is all I can say.
    Vicki O'Grady