Sunny Days

At the end of last week, the plan was to try weaning Sunny off of the medication that she'd been started on in the CICU. Since the flow restrictor was seemingly doing what everyone hoped it would, the team wanted to see how stable that improved function was without the medication. Sunny was completely off of it on Saturday, and they scheduled for an echo Monday to check how her heart responded. She slept through most of her echo, getting cranky only at the end of her first of the morning echocardiogram. I can't imagine being woken up by a stranger probing cold, squishy gel around, I too would be (at the very least) cranky. The results were good! There was essentially no change, which in her case is good. They were testing to see if there'd be a difference after she was taken completely off of the medicine,  & there wasn't.   We hung out for most of the week, waiting for her case to be discussed Thursday at the surgical conference. I got another trach insertion compl...

  Last Friday, our doctors sat us down to discuss Sunny's heart function.  Since the middle of February, they had been keeping an eye on it because of some decreased in function. We moved back into the CICU to start her on a drug that they hoped would improve the squeeze & relaxation of her heart.  After about five days on the IV medication, Sunny had an Echocardiogram to check if it had helped.  It hadn't. The dosage was increased on Monday of last week, and an Echo was ordered for that following Wednesday.  Because there was still no improvement of function, the team discussed Sunny again during the Thursday surgical conference.  On Friday, it was expressed to us that because her heart was not responding, it was not likely she'd recover from a heart surgery.  Since her heart wasn't improving on the medication, they thought it likely that it was ultimately her Trisomy diagnosis that was affecting the muscle as a whole, and not something as tweakab...

  The tail of last week ended how Sunny likes - with everyone talking about her.  The cardiac surgery team discussed her case again - this time with the updated report that her heart's function had decreased since their last conference about her.  They had tried giving her some medication to increase the function. Sunny's heart wasn't declining on it, but it also wasn't improving.  In the condition that her heart was in, the surgeon did not want to perform any heart operations, as he believed she wouldn't recover.  They gave us a few options as far as next steps, but none of them were glowing courses of action with everybody's seal of approval.  One of the choices was to try regulating some of the blood being sent to her lungs.  The stent placed to make up for some the irregularities of her heart, was keeping her alive which is good, but it was doing too good of a job.  It was speculated that it was allowing for too much blood to be sent to her l...

  Monday, Sunny had a follow-up echo to check on how and if her heart was improving in flexibility since starting the medication. The results showed no real improvement. The Dr said that it was good and bad - good that it hadn't gotten worse, but it hadn't gotten better.  They upped the dosage & decided to do another echo in a few days.  Wednesday was BUSY for lil Miss Sunny Buns. The morning started off with that repeat echo, which showed essentially no change.  She also had a redressing of her picc line, a scope to see if they needed to size up in trachs, and then the trach change.  She was pretty displeased with all the activity of the day, as well as hangryyy as she had to fast for the scope and trach change. Sunny IMMEDIATELY zonked out after the trach change and some dinner.   The doctors are discussing the next steps now that her heart isn't as happy as it had once been.  Ideally, they were going to send us home to let her grow & th...