A better day

It's been a good day.  Josiah was awake at times and he didn't have any big desats.  His ventilator was weaned from a peep of 7 in the morning to 5 by the end of the day.  They are planning to try to extubate him tomorrow or the next day if possible.  There was no evidence of fungal matter in his abdominal ultrasound so he was taken off the antifungal medication.  He had an echocardiogram today but I didn't hear that it found any new information. 

At around 5:00 PM Josiah was suctioned and his heart rate went to 202 bpm.  When I left at 6:30 PM his heart rate was still 190.  He had an ECG but it was hard to confirm if Josiah was having an arrhythmia.  When I called tonight the night nurse told me that the rate was coming down to the 170s and they had decided to give him some amniodarone to help it decrease.

They are testing Josiah off of the cooling blanket to see what his fevers do.  Due to the way the cooling blanket works, it's difficult to know what's happening with his temperatures.  It's set on auto to a certain temperature but Josiah's temperature overshoots the mark which means he goes from being cooled to being heated to being cooled ....

I decided to cancel the family meeting tomorrow as Josiah has taken some strides forward so the potential catheterization will be put off to at least next week.  I regularly ask all my questions and they are answered so at this point I don't see a need to sit down with everyone. 

The nurse asked if I wanted to start getting Josiah's feeds for him and giving him some of his medicines which he gets through his NG tube.  I prepared his enoxparin injection but I didn't give it to him.

I was chatting with another heart mom tonight.  Her daughter Aleeda is around the age of Josiah and she is waiting for a heart transplant.  She has started to deteriorate recently.  If she deteriorates too much, she won't be a viable heart transplant candidate and she'll be taken off of the list.  The stress of waiting and not knowing is starting to get to Aleeda's parents.  She said she just needs something to happen.  I asked for permission to post this information and ask for prayer and she agreed.  In our previous conversations, she's always told me how happy her daughter is but now she's not smiling very much and doesn't want to cuddle much.  To those who pray, thank you.

It's time for bed.  Thanks for your prayers and support.

Blessings,

Elizabeth