Hospital Life...Day 25

Today is Day 25.  If you missed yesterday's update, you can read it HERE.

There is not much more heartbreaking than watching your child suffer in unbearable pain.  That was what most of today was like.

Let me back up though.

I was woken up by the doctor somewhere around 4:30 this morning.  That nearly did me in.  However, it wasn't what I was thinking it was going to be.  Apparently Peyton, by that point, had not wet a diaper in 12+ hours.  The nurse had already been watching this and they did a bladder scan and discovered she was retaining quite a bit of urine {I think the doctor said about a half liter}.  It's not good to retain, so they decided they were going to do a one-time in and out cath to empty her bladder.  The doctor was letting me know what was going on.  They gathered up their supplies and were just about to start opening packages up when they opened up her diaper to discover that she just peed.  Way to go, Peyton!  She did not have to be cathed, which was wonderful news.  That would not have been pleasant for her at all.

The resident came around just before 8am.  Once again, Peyton's leg looks no better.  She was sleeping, but she started to have this strange movement with her respirations.  We watched that.  He paged the other resident, who came in pretty shortly thereafter.  Meanwhile, Peyton did stir a bit, and when she did she did not appear to be comfortable at all.  When the other resident came in, Peyton was not making that strange movement.  It only lasted a short time anyway, but she hadn't repeated it.  She listened to Peyton and, while she sounded clear, she noted her breaths seemed long/slow.

The team rounded sometime just before noon.  I was, again, invited out to the hall with everyone.  It was quite a large group.  They went over everything system by system as they always do.  It's always interesting to hear what they have to say.  That took quite a while to go through everything.  Once that was done, they came in to the room.  Peyton was awake but having some discomfort which quickly escalated into the worst pain I have ever seen her in {or anyone for that matter - myself included}.  It went on and on.  She was absolutely inconsolable.  One of the big topics of discussion is pain management.  I was glad everyone was in the room to see what she goes through, although this was, by far, worse and longer lasting than anything I'd yet seen.

I was by Peyton's side for the most part but then I had to step back and I just cried.  I hate crying in front of one doctor, but it was everyone.  I just want to fix Peyton.  I want to make it all better for her.  And if I can't, I want to take her place.  And I can't do that either and I just feel so helpless.  It's worse because she cannot communicate in any way at all to let us know where she hurts or to let us know what makes it better...or worse. 

Peyton's physical therapist from the outside world came to visit and she walked in to all of this and I felt so bad that's what she walked in to, but it was so good to have someone in the room who wasn't there in a medical capacity just to stand with me through it.  We glanced at the clock at some point shortly after everyone had cleared out of the room and it was 12:45pm, so between being out in the hall and being in the room, these people were with Peyton the better part of an hour! 

Peyton's continuous Morphine dose has been adjusted upwards.  There are also orders written for "rescue doses" which are doses to be administered if needed for breakthrough pain.  She can get up to 3 in an 8 hour period I believe.  I would say that it was not until about 4pm that her pain was "controlled" to where she was actually sleeping soundly and not having intermittent periods of pain.  While our visitor was here, Peyton did rest some, but she'd stir a little here and there.

So how's the leg you might be wondering??  When the team came in on rounds, her leg was worse.  It was more red.  It appeared more swollen.  An ultrasound was ordered to see if they might be able to see any signs of an abscess.  They did not.  That doesn't mean she doesn't have an infection.  The bone scan will now be happening on Tuesday.

I had another sit-down today with one of the people on Peyton's team to address my concerns.  I am too overwhelmed, tired, emotional, etc. to get into that.  Today was really rough.  I think we have all been pushed far beyond our capacity.  That said, we are still trying to figure this leg thing out but mostly we are trying to keep Peyton comfortable.

If you are reading this and you are a part of Peyton's team {particularly if you happened to be present in the room this morning}, thank you for all of the concern you are showing for Peyton and for us as a family.  I know what it feels like to watch things unfold as her mother.  I know you are doctors and nurses and you don't have the personal investment in Peyton that we do.  But you're not machines either.  I don't know how you manage to remain professional {calm, collected, etc.} in situations like these.  I can't imagine it's easy for you to see a child in so much pain either.  I just want to thank you again for everything you are doing for her.

Praying for a peaceful night for Peyton.