Wednesday

Bella is more comfortable this morning.  We do have soothing music playing and she has been resting.

The pulmonologists came and talked to me.  We are all talking about the process of heading home.  What an amazing place to be in!  How different than two weeks ago today when I was looking at caskets.  Both the Pulmonologist and the Critical Care Attendings feel that now Bella has had her trach, we are dealing with a new kid.  The Bella of the past is not the Bella of today.  One doctor said that because she was having to work so hard (a baseline of retractions and a Respiration rate of 60-70 when well) was causing a great deal of negative pressure in her lungs.  This is why the capillaries were leaking so much fluid into her lungs.  So with our new respiration rate of 30 and the ventilator, along with time for growth and strengthening of the muscles, the leaking shouldn’t happen as much.  We should be able to be off diuretics in a few months.  And they should be able to follow us clinically with visits further spread out (like once a month versus once a week with cardiology).  I must admit that I want to believe that.  I really do.  My experience doesn’t support that.  But I read this morning about learning from the wisdom of others.  I will try to have hope.  They did tell me that I will know, as her mother, even better than an x-ray, when she is not doing well.  OK.  We move forward into this strange new world with faith and hope.

Bella continues to be low on her potassium.  So they are having to give her a lot of extra potassium.  They feel the answer to that is to remove one of her diuretics (she’s on 3).  She was quite positive yesterday, but a normal person is positive.  And there was no x-ray this morning because of the fresh trach precautions.  I am concerned, and I have voiced it, but I am trying to have faith in this new plan of attack.  Oh, I hope they are right!

The difference a few hours can make………

Bella got very cold.  Her skin was dusty and marbled.  Her pulse ox was good, but her body was not matching the monitor.  Then she went trachy, 180s.   Lots of people were in our room.  Mama was extremely nervous.  When I watch all of those alarms going off, I can’t help but wonder if this is it.

She spiked a fever in the middle of all of this (102.1).   Her chest x-ray shows some fluffy lungs – they are going to re-think their reduction of the diuretics (ugh!).  Cultures have been drawn and two heavy duty antibiotics are being started.

We have been here in the ICU for a month.  Jason and I were holding our breaths that she wouldn’t get sick again.  We came down here with aspirate pneumonia.  We were on a course of antibiotics.  We had one day of no antibiotics before she got some bacterial thing.  The antibiotics for that finished at the end of last week.  We were pleasantly surprised that she didn’t pick up something else over the weekend.  She was healthy enough for her surgeries, and now here we are again.

Sweet girl.  I wish for you a moment free from pain and sickness.