Hospital Life...Day 8 & 9

I did not get a chance to update yesterday {Day 8}, so as we move into Day 9 I thought I would start the day with a quick update before things get busy again.

Yesterday morning, I would say that the swelling in Peyton's leg was no better.  In fact, throughout the day, we noticed that she was becoming puffy in other places - her face, arms, sides, etc.  This is something called third spacing.  Essentially, the proteins that are supposed to transport fluids through the vascular system are lacking and the fluid is spilling out into areas where it shouldn't be, like the soft tissue.

When the doctors rounded, we discussed her anemia.  They did wind up giving her an IV infusion of iron yesterday.  They did not give her another albumin infusion as they wanted to wait until today to see what her numbers look like before doing another.  In addition, her hemoglobin is dropping again.  On Saturday {after the Friday blood transfusion} her hemoglobin had gone from 7.2 {needing transfusion} to 9.  I'm not sure what it was on Sunday, but on Monday it was 8.6 and yesterday it was 8.2.  So she's right on the border of needing another transfusion.  Today's numbers will determine what happens there.

They do not understand why she is losing protein.  She isn't losing protein in the ways you'd normally expect to see.  The team has actually been having discussions with the Geneticist in Boston - just trying to put their heads together to see if there are any ideas or theories on the whole current picture that is Peyton.

Yesterday was filled with a lot of very rough moments.  Her pain level is still up there.  It seems like it's being managed ok, but then she'll have moments where she's really irritable.

As I sit here looking at Peyton this morning, she is definitely more alert.  She was extremely junky sounding yesterday morning, throughout the day and particularly last night.  The Respiratory Therapist said yesterday that she was not exchanging air very well on the left side.  She's just working a little harder than normal to breathe.  Her heart rate looks better this morning for sure.  She's still very puffy. I'm anxious for the doctors to start coming around so I can hear what their thoughts are today.  They've been getting daily weights on her and today's seemed quite a bit lower than yesterday.  Before you get too excited that fluid must be coming off, I think they need to re-check her weight.  The bed has a built in scale.  They zeroed it out yesterday with all the extra blankets, pillows, etc. on it.  When they took her weight this morning, they took everything extra off the bed.  Of course her weight will be significantly lower!

That's all I know for now.  I just wanted to get an update out there about yesterday since I didn't get a chance to last night.

Today is Day 9.  I'll update again later on.  In the meantime, please just continue to pray for her.  And for her weary parents.  This time around has been exceptionally hard on both of us.  We have always known that Peyton's life would be far shorter than we want it to be.  However, despite all she has been through in the past, we have never felt more like we were reaching the end than we have this past week.  All that said, she has been known to rally in the past and we could be sitting at home next week thinking how ridiculous it was to feel that way.  I do want to stress that nothing has been stated that anything is imminent, but as a parent sitting here watching her suffering this week, you have to wonder how much more a body can take.  So our stress level has been higher and so have our emotions.  I just pray for her healing, no matter which form that takes.  I just pray that God's will is done.