broken

Day 24 broke me.  I don't know if it was getting to spend the morning with Connor doing normal mom things or the breathing tube being in longer than expected or this vicious cycle that Lucy's body is going through.  Whatever it was, the tears started on my drive back to the hospital and continued throughout the day.  When Lucy's nurses decided it was time to re-tape the breathing tube, I knew that was my cue to leave.  I did the only thing I thought would help, I went running.  It's hard to remember in times like these to make sure you are taking care of yourself as well.  Even with Lucy sedated, I find it hard to leave her bedside.  This hospital trip though, I am making a conscience effort to take breaks.

This cycle that Lucy is on, starts with the breathing tube.  We can't extubate until we remove the extra fluid hanging out around her lungs and belly,  when we amp up medicine to help rid the fluid, her blood pressure drops, then her profusion to her kidneys is low so they don't recover as quickly, so we give her more fluid, which then leaks out to her body so the tube can't come out.  It seems like we are fighting an uphill battle.

The dialysis was to help give her kidneys a break and slowly take off some of the fluid.  However, even the smallest amounts were causing drops in blood pressure.  Friday, we stopped removing fluid through the CRRT and just focused on giving her kidneys a rest.  Early Saturday morning the CRRT machine alarmed with a clot.  The nephrologist was consulted and she recommended to turn off dialysis and run TPA (clot dissolving medication) through the line.  Once that was done, they would check access to ensure the line was clear.  Since the machine was off they gave Lucy's kidneys a test run.  Today, they would watch output and evaluate in the morning.  If her kidney labs look good and she consistently pees throughout the night, they may add lasix tomorrow to see if we can pee out some of the extra liquid.  If they see a decline in the output or her labs look worse we'll go back on dialysis.

Maybe part of my breakdown is that it feels like a week has gone by and there doesn't seem to be a lot of progress.  I was told today "her body looks worse on the outside, that it does the inside".  As much as her body looks broken from the outside, I have to remember each day we are taking baby steps to get the inside healed.

If you are praying with us, pray specifically for
-Strength, strength and more strength for Mike and I.
-For Lucy's team to figure out how to remove this fluid safely so we can get that breathing tube out.
-For Connor to continue to be an easy toddler as he bunks full time with my parents.