Hospital Life...Days 6 & 7

It took almost 7 years, but Peyton spent her first holiday in the hospital yesterday - Easter.  Obviously we truly rejoice at the significance of this day.  That said, it really stinks to spend a holiday in the hospital.  I couldn't be at church so I tried to join in our church service online.  There were multiple times, but people kept coming in and out, or she was in the middle of respiratory treatments, or I just couldn't get on the site at all.  I didn't get to church in any way yesterday, so that brought me down.  Then there was the missing of a nice Easter lunch with friends who had invited us.  Then there was the missing of people in general.  Ron's dad and his wife were arriving in town yesterday and they did come up for a short time later.  Moira didn't seem overly thrilled to be here.  It wasn't a long visit.  Then there was the fact that Peyton just had a really rough day yesterday - very irritable, cranky, in a lot of pain.  I kept thinking of how much pain one can possibly bear watching their child go through and relating that to the Easter weekend - God allowing His son to suffer.  Anyway, I won't go down that road.  I think I have cried enough for one 24 hour period.

Peyton seems to be improving from a respiratory standpoint, which is great.  Also neurologically - she's not "out of it" like she was the other day.  But there are still issues going on that need to be figured out.  One such issue is some swelling and redness that started a couple days ago.  It's in the area above where the splint on her leg stops.

You can see how it's red and puffy.  Overnight last night, the swelling began migrating into the groin area.  The redness extends there as well as towards the back side of her leg going in the other direction.  The edema isn't pitting and there aren't any hard areas.  Her circulation to her foot is good.  The splint isn't too tight.

One thing we've discovered is her albumin is very low.  This might have something to do with why she is pooling fluids.  They are having to be extremely careful because her fluids are higher than they should be, but they can't just give her a diuretic to make it go away.  They have to be very cautious about fluid intake and output.  She does require an albumin infusion.  That will happen today.  They will also do an ultrasound on her leg.

In terms of seeing if there is another fracture, they are very hesitant about doing any additional x-rays...anywhere.  Peyton has had so much radiation between x-rays, CT's, etc. in the past month or two.  They don't want to expose her to any more than absolutely necessary.

Right now, the plan is to do a lot of watching of this swelling, all her labs, etc.  I think they wanted to try to get her home the early part of this week, but I'm doubtful about that happening.  The nurse today thought it might be a good idea to get Peyton into a regular bed rather than a crib, so they are actually working on that right now.  She's got her bed, she's in it, and the nurse and tech are working on getting pads set up on the side rails.  She looked so huge in the crib.  Now she looks so tiny in this huge bed!  I'll post a picture of that next time.

We truly appreciate all the prayers.  As I overheard one of the residents or students saying on rounds out in the hall the other day, Peyton is a "challenging" case.  As you know, when we do go home, it doesn't get less challenging.  It gets more challenging.  They Peyton we knew last week is gone.  This is another decline in her overall condition.

Did I Say She Was Home Again

Remember that last post I wrote where I said Peyton was home again?  Well...she's at her home away from home...again.  Yes, she is in the hospital.  Again.

This morning {Sunday} when Peyton woke up, I looked at her pulse ox monitor to see that her heart rate was running around 161-162.  I immediately felt her, as increased heart rate can come along with fever.  She felt hot, so I took her temperature.  It was 100.0.  Not horrible, but she normally runs low, so for her, that's probably more like 102.0.  She was also extremely irritable with her hip pain.  I gave her some Tylenol and Oxycodone.  I was thinking that we might be heading to the ER again, but when the nurse arrived at 8am, we decided that we could hold off on that.

Ron, Moira and I went to church as planned.  When we came home, she seemed "ok".  At least ok enough to feel comfortable with the decision to wait it out and not rush to the ER.  Within an hour or so, the nurse asked me to come and take a look at Peyton.  Out of nowhere, her left arm had become quite swollen as had her right leg.  In fact, I measured her calves and her right measured two and a half inches bigger around than her left.  Her good leg only measures 6.5" around, so a 2.5" difference is significant!

Our home nurse wound up calling up to the unit where Peyton had been discharged from and she eventually spoke with the resident who had seen Peyton in the hospital.  I ultimately decided that I was not comfortable with what I was seeing at all and we took her to the ER.

Long story short, she had a venous ultrasound and she does not have DVT {deep vein thrombosis, or, blood clot} in her leg.  Her blood work does not indicate any sort of renal failure.  In fact, there's just plain no answer...again.  The doctors essentially left it up to me as to what to do - stay or go home.  Well, I was definitely not comfortable with going home.  Her leg and arm are swollen.  What am I supposed to do with that??  What if it gets worse as suddenly as it appeared??  In fact, as we waited in the ER, her leg began to feel warmer and warmer.  The concern is that maybe it is cellulitis.  I decided that I would rather she stay for observation.  The alternative would be to go home, the nurse's shift would end at 8pm, and then I would either a) have to stay awake 12 hours til the next nurse would arrive at 8am Monday morning or b) fall asleep {I sleep in her room} and risk missing anything that might happen overnight.  At least in the hospital there would be people to monitor her through the night.

So, here we are...again.  And I am pleading for prayers for her...again.

I will keep you posted on any new developments.

Still a Mystery

Things did not improve much over the course of yesterday.  I think if she had been left alone, Peyton would have slept all day.  Of course, she wasn't able to do that.

Peyton's face and feet seemed pretty puffy, which is always a concern, but particularly with cardiac issues.  They ordered an echocardiogram and apparently, based on what I heard this morning, that seems to be ok.  

Dermatology came in and checked her rash and bruising.  No answers there.

At one point, the doctors had been called back because Peyton just wasn't perking up and the swelling seemed to be worse.  Between that and some other issues, they decided to call the PICU doctor to come down and take a look at her.  She felt that whatever is going on with her is not respiratory an is likely neurological (heard that before).  She ordered an EEG.  That was done last night.  I haven't heard any results from that, but with the way things are going, I expect to find that it was normal.

I just have to take a minute to thank the people who have helped us out, particularly with Moira over the past few days.  It really means a lot!  Thank you!!

I have heard that Peyton may be going for an MRI today.  I'm not entirely sure.  I will, of course, be keeping you updated.