Day 11 - The "Floor"

They moved Lily to the "floor" (Heart and Kidney Unit) this afternoon.  They doubled her heart failure medicine yesterday, and she didn't have any arrithmiya's for 12 hours.  They kept her pacing wires in her heart "just in case" she needs to return to the ICU.  Her right lung looks the same...still collapsed, but not worse. Her chest tubes are still dumping fluid and blood clots.  They increased her Zofran (nausea medicine) from every four to every six hours.  This definitely helped until her IV ports went bad and we ended up two hours late for her dose of medicine.  No fun!

As soon as we got to her new room, Lily started grieving pretty hard.  I think she was nervous and scared about what was going to happen.  After 11 days in the same room with the same nurses, I think she grew pretty comfortable.  I tried to make her laugh and comforted her as much as I could, and then it hit me.  I am grieving too.

This is the first time in the 11 days that I have felt "down".  I miss the ICU room.  I miss the ICU nurses.  I miss the constant and complete interaction I had with the cardiologists.  I miss the extra attention of being cared after by a nurse 24/7.  I miss the people.  I miss the noise.  I miss the complete trust I had in the team of people who were caring for my daughter.

Here on the floor we are in a pretty large single room.  I have a cot or a recliner to sleep in.  I have my own bathroom with a shower.  However, as soon as we settled in, just like Lily, I quickly realized that this is very different.  It is supposed to be different.  I get it.  But change has always been hard on me.  The nurses only come in the room to administer medicine.  They do not sit in the room with us or right outside the room looking at us through a window.  The point of the Heart and Kidney Unit is to get the children ready to go home. This afternoon I spent the better part of the day listening to beeping from Lily's monitor because they turned her oxygen down from 2L at 100% to .5L at 100%.  Her nurse excitedly told me that tomorrow they were going to try to wean her off the oxygen.  I explained to the nurse that in the ICU just yesterday when they tried to lower her O2, she went from 98 to 60 in about 30 minutes.  Yet, they had to see this for themselves I guess.  The nurses didn't even come into the room until her oxygen sats were in the low 50's.  By that time Miss Lily was scared, mad, and grunting for breath.  I felt very alone and isolated during this time. 

Don't get me wrong.  I want to get out of this hospital.  I want to go home so badly.  But 12 hours of decent vitals from Lily did not bestow a ton of confidence in me like it did for the doctors I guess. 

All I wanted more than anything was to make it out of the Cardiac Intensive Care Unit.  And now that we are out, all I want is to be back in.  Hoping my attitude and perspective change with the rising of the sun. 

Be strong and courageous.  

Do not be terrified; do not be discouraged, 

for the Lord your God will be with you

wherever you go.

Joshua 1:9