Hospital Life...Day 12

Weekends are a little quieter here.  There aren't so many people around, it seems.  The residents came by and then the team {a smaller version of the team that rounds during the week}.  I was sad.  The doctor who has been with Peyton from Day 1 went off service.  A new doctor is on for the weekend and then another new one will be on after the weekend.  Truly, there's no "bad" doctor on the list of doctors whose service she could be on, of all the ones we've ever seen.  But if I had to choose my top 3, these three would make up that list.  It's funny, because I had just had this discussion with Ron.  I knew that this was coming.  I shouldn't fear change so much. 

Since we're in it for the long haul, I had Ron bring a couple comforts of home for Peyton - not just me.  She's had her pink hippo since we went to the ER 12 days ago, but I had him bring her frog and her blanket from her crib at home.  We've got an animal theme going.  the purple elephant is new.  MUSC has a volunteer program called Happy Wheels.  Donations of books and toys are given and each Thursday, volunteers come around with a cart.  Each shelf of the cart has toys or books {one week it's toys, the next it's books} grouped by age range.  Peyton has been the recipient of several Happy Wheels items over the past few years.  The elephant was from this past Thursday. The frog is actually from one of her stays this past February.  What a great program to have.  If you would like to find out more and especially if you would like to contribute in some way, you can read more HERE.  As for the hippo that everyone seems to love so much, I received that myself as a "blogger perk".  Over on my personal blog, I was contacted by a company called Hullabalu and asked to do a review of one of their toys in exchange for the toy of my choice.  I gladly accepted the offer.  You can read about that over HERE.  It's too bad Dr. M went off service because Peyton's about to add another animal to the collection later today as I asked Ron to bring another specific item from home.  He was always commenting on her little friends.

As for how Peyton is doing, it is honestly so hard to say.  I had a talk with the doctor yesterday outside of the whole team being present and there is still the hope that we will get her back home.  Some of her lab numbers look a little improved {hemoglobin, albumin} but she just doesn't look good.  I took this picture yesterday.  She doesn't look well here and she doesn't look as "well" today as she does in this picture.

One concern that I have right now {since yesterday} is that her arms and hands have been icy cold.  Absolutely freezing.  Sometimes it's her entire arm through her hand.  Sometimes it includes part of her side and part of her chest.  Sometimes it's one arm/hand and not the other.  Sometimes it's patchy spots of coldness on both sides.  Along with it, she's so clammy to the touch.  She is sweating a lot.  If you run your hand through her hair, her scalp is wet and her hair is soaking wet in places.  Her temperatures have been up a little - in the upper 99s to 100.3ish.  For her, that's high.  Fever yet freezing cold to the touch.

I don't understand what is causing this to happen.  Is it something in her brain not firing right?  I'm not sure.  The doctor this morning said that it's possible that with the diuretics being given to take fluid away, there's a shift in her system that is causing the hemoglobin numbers to be falsely higher than they really are.  I can't explain it right - but it made sense when he explained it.  Her hemoglobin has been trending upward the last couple of days - enough to where they called off a possible blood transfusion on Friday.  It's possible her anemia is causing this issue with her body feeling so cold.  It could also be some sort of infection, although I think that's a small possibility right now, but certainly something to watch for.  They are obviously going to keep a close eye on everything.  The doctor said that it is possible she may need a transfusion and so not to be surprised if that does become necessary again.

Peyton completed a total 3 infusions of iron by IV yesterday, after being given once every couple of days.  The plan is to repeat an iron study on Monday to see where things stand.  Peyton's potassium is also really low.  I believe they had added some potassium to her list of meds {via g-tube} but it is quite a bit lower now, so they are currently giving her an IV infusion of potassium.  That will run over a total of about 3.5 hours.

Gastroenterology has weighed in.  They ordered some stool studies to be done.  She doesn't have c diff, so that's good.  Some of the studies are going to take some time to come back, but they are essentially looking to see what fats and proteins are being excreted in her stool.  They currently don't know where she is losing her protein.

I just want to thank the people who have been so good to us.  Neighbors who have helped out with Moira - you have no idea how grateful we are that you've been able to step in and help with her.  Friends, please remember Moira when you're praying for us because I know this is hard on her even if she doesn't say a whole lot.  I don't know how much she is aware of how sick her sister is.  We haven't had a "big" talk with her because we don't want to cause more harm than good, especially if it's done prematurely.  But she has to be aware on some level, so please pray for her.  Friends who have come to visit, brought food or snacks - thank you!!  Your company is so appreciated.  So is everything else.  But just to have company is huge.  When we're up here alone, it can start to feel pretty isolating, even if I do have the internet to bring the world a little closer to me.  Family.  Wow.  We were expecting Ron's dad and his wife to visit long before Peyton was hospitalized.  I am so grateful they still came even when the found out half the family wouldn't be home and that they got a chance to come visit with us up here.  We also had the unexpected surprise of having my cousin and his wife come to visit.  He just happens to be Peyton's godfather and they are vacationing in the Myrtle Beach area, which is maybe a couple hours north of here.  We're so grateful they came to visit!  

And then there's the medical side of things.  This is Day 12 and, honestly, until a little blip with the nursing this morning, I haven't had a single issue or complaint about anyone or anything.  Even with the issue this morning, everything is resolved and we're back to things being exactly as they were.  From doctors to nurses to respiratory therapists to nurse's aides to everyone else who has been involved somehow in caring for Peyton, please know that all you do is so very appreciated.  I know without a doubt that Peyton is a mystery.  A challenge.  I know that what's been going on has probably been frustrating.  As Peyton's mom, I watch and I wish I could fix things.  I don't know how it feels to be the professionally trained person who is supposed to be able to fix things only to keep coming upon more and more obstacles.

So, that's kind of where we stand for right now.  I'll be keeping you posted....