waiting, waiting

I was waiting and waiting to write this because I really wanted to be able to say we were moving to floor two!  But alas, we hit another bump in the road.  A small bump, but one that is keeping us in the ICU.

Last week, we finally were able to come off nitric Wednesday morning and the team immediately scheduled the swallow study for the same day.  We had two full extra days of practicing with purees, so I was really hopeful.  Lucy got a dose of versed and we wheeled her, bed and all, down to radiology.  For the swallow study, the x-ray table is placed vertically with a high chair next to it.  We have a plate of food, that consists of thin liquid, nectar, puree and solid.  All have a dye that shows up in the x-ray.  We offer each to Lucy and watch as she swallows.  She was not a happy camper through most of it, but Jen (our speech therapist) assured us she did great.  She passed on solid food, but failed on thin liquids and nectar.  So what does that mean?  It means that Lucy is able to have any solid or puree foods she wants, but cannot drink at all.  Panic, right?  Not Lucy.  She has not asked for a drink since she has been able to eat solid foods.  We are still on a restricted fat diet, so our options are somewhat limited.  But Lucy has been happy with egg whites and fat free cheese, pasta with marinara, all the broccoli and beans she can eat and some fat free turkey.  This weekend we did a calorie count and she was up to about 250 calories a day.  I will keep having to remind myself that eating takes almost all of her energy and it will take time for her to be able to consume all her needs orally.

The rest of the week we looked to make more small adjustments to her treatments and medications.  We have been off all IV medications for over a week.  We slowly started to ween some of her diuretics, anxiety medications and are still getting the dosing right on her coumadin.  With the addition of food, we needed to increase her dose.  It looked like we were in a good spot over the weekend and even got outside both days.  After coming off the high flow cannula, there was anticipation of a possible move to the floor mid week.  Unfortunately, a small plural effusion showed up on the x-ray Monday.  We decided our best course of action was a dose of IV diuril.  Today, the effusion appeared bigger and two more doses were ordered.  The CPT vest treatments that were stopped over the weekend were also added back twice a day.  With rounds over in a matter of thirty minutes, reality that we would probably ride out the rest of the week in the ICU set in.  We need to clear this plural effusion and then get on a home regimen that will keep the fluid away.

I said it a few weeks ago, how this stay was eerily similar to our first.  I did not realize how right I was:
2014 - 2 surgeries, 2 codes, multiple intubations, Laryngoscopy, 84 days in the ICU
2016 - 3 surgeries, 2 codes, multiple intubations, laryngoscopy, and tomorrow marks 84 days in the ICU

As we work to get the fluid off, I will continue to try to make Lucy laugh and remember that as hard as this is, for our family to be split, it is not permanent.
I went for a walk tonight, as I passed a church, 1 Peter 5:7 scrolled across moving message board.
'Cast all your anxiety on him because he cares for you'.  So I am going to try to do that!

Her personality is slowly starting to show through!  Oh how I missed it.