Monday, April 8, 2013

Hospital Life...Day 13 & 14

Today marks two weeks in the hospital.  For the record, this is not her record.  17 days is her previous record.  Wasn't planning on breaking it, but I'm fairly confident we will.

Yesterday {Day 13}, Peyton continued to have icy cold arms and hands.  She would be sweating but be freezing cold in areas - not all over her body.  Her temperature would be taken and it would be 99.5 to 100.3.  Very strange.  Her hemoglobin dropped to about 6.6 - 7.1 {it was checked and re-checked}, so she definitely required a blood transfusion.  So, once again, my thanks to the anonymous donor who provided this for Peyton.  Thank you!

The blood transfusion takes a few hours.  At some point while that was going on, her nurse noticed Peyton's nails were getting pretty long, so she left and came back with a nail file and nail polish.  Peyton had her first manicure!  So cute!!  Thank you, Kelly! 

For a couple of hours after her blood transfusion, Peyton seemed to perk up a bit.  She certainly wasn't "well" by any stretch of the imagination, but compared to how she's looked and behaved lately, it was a huge improvement.  I even got some smiles out of her.  I had to take a picture and share.

That sure was a sight for sore eyes!  I will say that this "up" period probably lasted only 2-3 hours, but I'll take what I can get.  Ron and Moira came by when she was towards the end of that period, so I was glad for Moira to see her looking more like that than like how she was before the transfusion.  I know Moira is having a difficult time with things.  She's starting to ask more worrisome questions about her sister.  I'm hoping she can talk to the guidance counselor at school.  She knows she can talk to us, but she may feel more comfortable with the guidance counselor.  As heartbreaking as it is to watch Peyton going through what she's going through, it is equally heartbreaking when I stop to consider what Moira must be thinking and feeling.  She's only 9.  I can't imagine.  She has dealt with so much as Peyton's sibling already and she's going to have to deal with so much more at such a young age.  I hate that for her.

After having a down day, I had a nice treat.  It was wonderful.  I have had a few other similar treats in the past couple weeks.  SO appreciated!!

As for today, her hemoglobin, iron and potassium are all looking better.  They still need to keep a close eye on those. The diuretics they are using to help take fluid off can have the effect of lowering her potassium, so they've had to give her quite a bit.  For now, she's ok with the regular potassium through her tube as opposed to the IV infusions she had gotten.  As for the iron and hemoglobin, waiting is key - will she start producing things properly on her own to sustain these increased numbers?  That is the question.  I would love to be optimistic here, but since she already had a transfusion a little over a week ago and then required a second one yesterday, I'm not sure.

We just aren't sure what the "big picture" is with Peyton.  She's got a lot of people trying to figure her out, that's for sure.  The doctor who was on service last week has been arranging a "family conference" meeting.  Really it's just to get together with the major players in Peyton's care right now to discuss what's going on.  I'm not sure exactly when that will be, but it will be good to sit down with everyone.

Though Peyton's labs were showing some improvement today, she doesn't look as well as those hours after her transfusion.  She's still puffy.  Her face, upper chest, and arms are a bit on the red side.  Not sure what that's all about.   Well be keeping an eye on that.

If I haven't said it recently {or enough}, please know how thankful we are for your love, prayers, and support, whether you are friends, family, anyone involved in any capacity here at the hospital, or someone who happened upon Peyton's story and is keeping her in your prayers.  Thank you!

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