Saturday, April 07, 2012

Not much going on

Trust me, do not worry if there is no news on here.  No news = stable at this point.  Its good we're here because Shelby is definitely needing the 6L of O2 all the time.  She's at 6L at 60% on the high-flow nasal cannula most of the time, but her nose has been bothering her the past few days so she alternates between the cannula and a mask.  The mask runs at 8L at 40% O2.  Don't ask me to explain the difference; I really wish I understood the percentages of oxygen and the liters (flow), but I don't.  And that's o.k. because people here do and her sats look decent.  She drops consistently down to the 60's when she hooks back up to the oximeter after using the bathroom :-( and then the nurses come in our room and I have to tell them "she just used the bathroom" and they calm down a bit.  We are really lucky that she is in a room (same room as her long stay here Dec-Jan) on 6W.  Normally they don't let patients on as much O2 as Shelby is on stay on the floor.  They typically have to be in the PICU.  Shelby has nothing else going on right now so the nurses are o.k. with her being here.  Any more O2 or if (God forbid) she develops some illness, its off to the PICU she goes.   While its hard to be away from Scott, Riley, Avery, my parents and our home, Shelby and I are resting much, much better here.  Sounds crazy, I know!  Since Shelby isn't right in the middle of the action at home (our living room) she sleeps in much better.  Since I know the nurses have her O2 monitor covered for the  night, I sleep really well.  Even if it is in a recliner.  I miss Scott terribly. Tomorrow will be one week since we've seen him and that's by far the longest we've gone apart, but he is just trying so hard to get everything done for nursing school.  I had to take his graduation counter down, but he only has 41 days to go.  My parents, Riley and Avery are coming in tomorrow to celebrate Easter and they'll spend the night so we can celebrate Avery's 5th birthday on Monday.  I'm so excited to see them.  They came in this week on Tuesday only to stay for a bit and then have to head back home because Avery spiked a temp :-( 

Things for our last living donor are looking good result-wise.  Further testing needs to be done this week.  Our surgeon leaves the country April 15th so she really needs this transplant before then.  There are other doctors to do it, but they will NOT schedule a living donor transplant while he is gone.  That leaves 8 days.  I hope a cadaver organ becomes available.  Let's hope with a PELD of 40 one does.


moreena said...

Just saw Avery's birthday pics. So cute! But I also know how hard it is to see stuff, important stuff, happening at home that you can't be there for. I'm glad you're sleeping better. It makes complete sense. Checking in every day hoping for some good news.

Lori & Bruce said...

I'm glad Avery is feeling better so she was able to celebrate her birthday.

Shelby has never been so close to a new liver. It is coming soon now. In the meantime, she is in God's perfect hands. He loves her dearly and His eyes are on her and He hears the thousands of prayers going up for her. Her new liver has never been closer.

Jenn said...

It is super-hard, Moreena. You are SO right and I know you've been in my shoes way too many times. I can't wait to be post-transplant so we can make a "new normal."

Jenn said...

Thanks Lori!