Friday, October 26, 2012

Not Quite Ready.....

Sunni had a pretty good day Thursday (yesterday).  They turned her ventilator down to a setting that was like being on CPAP without actually being on it.  That was around 9 in the morning.  They did her blood gasses every 6 hours to make sure that she was handling it.  She did well with that all day into the next morning when we arrived.

Backtracking a little, one concerning thing that we learned was that she had a bloody substance being drained from her repogle (stomach drain) that she had not had before.  It was mores like old blood (brown instead of red).  They hoped that it was just the suction on the stomach irritating it.  They are not worried about it atm.

So today we come in to GREAT news!  Our favorite doctor even came by so she could tell us personally.  I was so happy when I updated my Facebook with the good news even though I thought maybe it was too soon to brag.  In case you missed that update the doc said she was still on the CPAP setting and was doing great on it, had good gasses, and her X-ray looked great (like the pleural effusion was almost gone).  The plan was to keep her on the CPAP setting through the weekend and extubated on Monday. AND the bloody stuff was clearing up.

Well.....we came back from lunch and she was getting an X-ray done.  The doc told us that while we were gone she started "breath stacking" which is basically inhaling several times and holding it each time without exhaling.  They had to turn the vent back on to it's old settings :/.  The XRay showed that the liquid was building back a bit again.  Not terribly....but a little. won't be Monday that she is extubated.  I am a little disappointed but glad we know she needs more time before actually pulling the tube.  The good news is that Sunni has been snoozing away almost all day and never got uncomfortable during all that jazz.

Keep praying for the pleural effusion to "fix" itself and GO AWAY!!


  1. Hang in there. It is not uncommon for our CDH babies to take a step back when it comes to getting off of ventilation. Many, many other families have similar stories, similar disappointments. It is awesome that she did so well for so long at the lower setting. Just hang on. She will recruit her strength and be ready in a little bit. Many prayers from Idaho!

  2. I was going to say something along the lines of what Pamela said. It's the NICU dance, two steps forward and one step back. It's so discouraging but keep up the strength!! God is good in this and he loves Sunni so much and knows her story already!! Keep trusting Him. That's always the best advise I can give. Sunni is a fighter and so are you!!!