Friday, April 5, 2013

Hospital Life...Day 11

Today is Day 11.  Friday.

This morning when I woke up, I immediately could hear Peyton's junky sounding breathing.  I looked at the monitor and her heart rate was up in the 150s/160s.  She was a little fussy as well.  As soon as a nurse came in, I asked if she could get something for pain in case that is what this was about.  Her temperature was also up.  37.7 C {99.86 F}.  It seems that people generally want to see her hit 100.4 F before they get concerned, although she normally runs around high 96s to 97.4, so 99.9 is high for her.  She was also very sweaty.  A while later, she was clammy to the touch and her arms and hands were freezing.  I'm not sure what that was all about.  As I type this now, she's 100.2 so I think they've called the doctor.  Her right hand is like a block of ice right now.  Earlier it was her arm and her hand.

Peyton's hemoglobin and albumin levels have come up a bit, so she doesn't need any transfusions for now, so long as she keeps trending in that direction.  Her white count is up a little, so they'll keep an eye on that.  She received an iron IV infusion this morning {her third so far}.  Hopefully she will start maintaining appropriate levels on her own.

I asked this morning if it would be possible to speak to Peyton's doctor without the whole entourage.  I honestly don't mind when a team of 10 or so students/residents/doctors come in.  I had questions that I wanted to be able to ask and discuss without an audience.  So once they came around, he stayed behind and we talked about all the concerns I have for Peyton.

My biggest concern this past week hasn't been when Peyton will come home.  It has been if she will come home.  I've said before that this visit has brought us the closest to feeling like that is a definite possibility.  I think that's a legitimate concern.  I am reassured that the doctor is still optimistic that we can get Peyton home.  I think there's a lot to sort through before that happens.  I feel more encouraged by some of the labs that have come back, although to look at Peyton, I still see a very sick little girl.  If I posted a series of 11 pictures, one for each day of her hospital stay, you would probably notice differences, but I think you would agree she still looks pretty horrible.  When I sit here listening to her breathe, there are times when I wonder how she can breathe sounding as bad as that.

Peyton is unique.  She's hard to read.  She's challenging.  She can change in an instant.  The little positive changes that are happening are good.  No, they are great.  I'm very thankful she did not require that second blood transfusion, although if it does become necessary, I will be equally thankful for her to be able to receive it.  I believe we are still a long way off from heading out the door with her and a lot has to happen between now and then.  I also think a lot could happen between now and then.  My head understands the information I am getting.  I do hope and pray for the best outcome and that she will be able to make it home.

In my heart, though, I know her time with us is meant to be short.  I know that it's all in God's hands.  Regardless of what is done for her here, it's in His hands and His timing.  I wish I could visualize on a timeline where we are at.  But we can't.  She's so complex.  Peyton tends to do things Peyton's way and we just follow her lead.  I asked specifically about where we were at in terms of needing to call everyone in.  Right now, at this moment, his answer was that if people wanted to come see her and have a nice visit in Charleston while they're at it, then they should.  But we're not at the point where if people want to see her, they'd better get here today.  Of course, all of that is subject to change.

I guess I will use the phrase that my Ob/Gyn in Houston used over and over with regards to my pregnancy after a massive pulmonary embolism in 2004 and then treating my general health again after an even more massive P.E. in 2006 {2 weeks after Peyton was born} - I am cautiously optimistic.  Although I'd probably say I'm being far more "cautious" than "optimistic" right now.  If you wonder where Peyton gets her ability to overcome some medical odds, you might take a look at my own medical history.  Well, that and the power of prayer and God at work in our lives!

As the day progresses, we are just watching and waiting and praying.  I'm waiting on someone to come and see Peyton since she's developed this higher temperature.  In the meantime, I'll continue to be listening to some powerful worship music.  I realized when I checked my iTunes that I'd listened to Strong to Rescue, a song from the Seacoast Worship album by the same name, 190 times 207 times {just checked again!}.  However, right now, I'm listening to Kari Jobe sing her little heart out.  This is such a powerful song.  I am listening, praying and leaning on this now.

Please know how much our family appreciates all of the prayers and support of all the people this blog reaches.  I know it's reaching more people than we even know.  If you feel led to share Peyton's story so that she can be covered in even more prayer, by all means please do so.  I also know it's possible that some of her medical team may come across this blog and we can't even begin to express our gratitude for everything you are doing for Peyton.  Thank you.

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