As you know, early Saturday morning Haven lost her I.V. access line.  We finally got a new line in place, but were not able to give her her appropriate medications until 5:00pm that evening.  That means she didn’t get her regular regiment of meds for approximately 16 hours.  That’s a long time.  This seems to have caused some less than ideal situations since.  Our biggest concern at that point was that during those 16 hours, her urine output decreased dramatically, and once we got her medications back up and running her urine output remained minimal throughout the rest of Saturday night.  By Sunday morning she had retained so much fluid (because she wasn’t urinating at her previous rate) that she gained a little over two pounds. 

All of that extra fluid caused her ventilatory (breathing) status to worsen.  We were called over to the hospital Sunday morning.  The attending doctor this weekend wanted to try a different type of breathing machine on Haven called an oscillator.  Typically, they put kids on the oscillator who need more ventilatory support than what the regular ventilator can give.  Haven was not at that point, but he thought the oscillator might be gentler on her lungs and maybe improve her situation a little bit. 

The oscillator works much differently than a regular ventilator.  The regular ventilator gives Haven 40 (or fewer) breaths every minute.  The oscillator technically gives her 300 breaths per minute.  It’s very fast.  Keep in mind that they are not full breaths, but rather the lungs are constantly expanded with a little variance on each inhalation and exhalation—thus why it is called an oscillator:  moving quickly back and forth.  There are a few drawbacks to being on the oscillator.  The biggest one is that Haven has to be paralyzed and sedated because if she moves or tries to breathe against the machine it can cause damage. 

So Haven was on the ventilator for 48 hours, and around lunchtime today we switched her back over to the regular ventilator because the oscillator wasn’t really proving to have any more benefits for Haven.  Hopefully, we’ll be able to remove the sedation and paralytic this afternoon.  Her urine output had remained marginal through Saturday night, Sunday, and this morning, but since later this morning she has been producing numbers that are remeniscient of last week’s progress.  For those of you that are keeping track of “the numbers” (and I wouldn’t get too caught up in that–it’ll drive you crazy), through Saturday and Sunday she was positive about 500 mililiters (more in than out).  She’s right about even so far today.  We’ll see how that goes. 

Currently, Haven is on tomorrow’s schedule for MRI’s of her brain and liver.  The results from these tests will be two more pieces in the puzzle.  We have a meeting this afternoon with her current attending doctor to discuss the seriousness of Haven’s condition and to continue tweaking our plan to try to get her puzzle solved.