Saturday, August 8, 2009

Find a Happy Place

We seem to be racing the clock.  Karsie busted another stitch.  We are really hoping that this might just be the bowels expanding as they move a bit and are now getting fed because that will eventually go down and maybe not be so detrimental to her patch.  However, it could just be that she is continually uncomfortable with the tubes in which case she needs to hurry and get those out so she doesn't get so upset that she continues to bust stitches.  It's not like those will heal and grow back together.  However, the surgeon is still saying he doesn't want to take her to the OR for that, so as long as her vitals don't plummet or a piece of her liver doesn't just start hanging out, she's staying put.  But there's only so much more that can happen before they just bite the bullet and take her in again which would mean a whole new patch or part of the patch along with another round of weaning off ventilators.

Good news:  Everything else!  She is now not getting any supplemental breaths.  She is getting something called a CPAP (continual positive airway pressure) which is just pressure given to her constantly.  Our lungs are like a balloon that we have to blow up.  You and I have a stretchy balloon because we are used to expanding our lungs.  When babies start to breath, especially preemies like Karsie, every breath is like that initial blow up of an empty balloon until they get enough strength that it gets stretchy like ours.  This new ventilator is like keeping the balloon blown up just a tiny bit so she doesn't have to use such force to blow up her lungs.  When she gets off of that, she is moved to the conventional nasal cannula.  She is having good gases still which means only a couple more of those and she's off the CPAP.  Also, she is still feeding well. Only a night to go and she will start getting breast milk fed to her.  We are really praying hard for her patch since she is doing everything else so well.  We really don't want to go through this all again.  But until then, praise God for everything else.

Update (8-8)

When we came in today Jaime, one of our primary nurses that are fabulous, told us that she just conked out 5 min. before we got there but had been very angry since 7 o'clock.  However, the entire time we were there, which was about 2 hours, she was asleep and her vitals were great. We are thinking that we will need to be spending a lot more time there, even though it gets exhausting, because she responds well to someone other than the nurses soothing her.  She just needs to be held.

Concerning news:  She broke another stitch.  The surgeon came by and still though it didn't warrant a trip to the OR, but if this continues it will.  We hope that the stitch that broke was one of her stitches that was close to breaking already.  

Happy news:  She is on 10 on her ventilator.  She will be put on another setting on her current Ewok-looking thing that just gives her constant pressure (light).  If she does well on that she will be put on the nasal cannula, which is what she had for a day before she had to go back on. This time she should be able to stay on it because she has been much more slowly weaned. Also, she's continuing to eat!  We are a day away from giving her actual breast milk as long as she keeps doing well on the pedialyte.  

As long as she doesn't have to go to the OR (which means we start this whole ventilation process over again) things are going well - minus the angry girl sometimes.