Wednesday, February 13, 2013

What Day Is It Anyway

As I sit here in Peyton's hospital room, I have to say that I really have to think hard about what day it is.  Is it Monday?  Tuesday?  Saturday?  Oh, yeah, it's Wednesday.  Forget thinking about the date!  We were here Tuesday to Friday last week and we've been here Sunday through Wednesday now this week.  I feel like I haven't been home in weeks, even though there was a brief 48 hour period where I think I actually was at home.  It's all a distant memory.  Being in a hospital 24 hour hours a day without stepping outside your room except to travel with your child to one radiology suite or another really confuses the heck out of your internal clock.

So, where are we at now?  Where did we leave off?

Bones.  Yes.  Peyton's bones.  Brittle bones.  Not to be confused with what most people think of as "brittle bone disease" {osteogenesis imperfecta}  This is not what she has, although her condition is brittle bone "like".  Confused??  Essentially, there are a number of factors that have contributed to Peyton's horribly poor bone structure.  She's special needs - many special needs children {particularly wheelchair-bound} develop bone issues because they aren't weight-bearing or using their joints the way healthy children are.  The bones don't get a chance to develop properly.  Peyton has been on seizure meds for going on 4 years {I think}.  Peyton is tube fed.  Peyton is severely copper deficient.  The list goes on.  But she has many strikes against her in the bone development category.

I eluded to some stressful events of late.  I feel I can at least clue you in now that we're past that.  In a nutshell, we have a young child who cannot communicate who came in with a significant fracture of unknown origin.  There is a certain protocol that has to be followed regardless of how much the evidence points to a medical condition.  It certainly doesn't sound "fair", but can you imagine how fair it would be for someone who was in this situation who did not have a medical condition if this protocol was not in place??  Immediately Monday morning, I was told what was going to happen and ultimately met with a forensic doctor.  She seemed very nice, but very professional.  Many, many questions were asked of me.  Many, many explanations had to be given.  Many doctors were consulted, including Genetics in Boston.  The chief of Radiology here at MUSC was consulted and ever last x-ray gone over since we moved here in August 2008.  Attempts had to be made at dating every fracture to see if it lined up with anything.  There were specific ideas in mind.  I finally found out yesterday that everything was going to be dropped without further investigation or a report being made.  Huge sigh of relief, but you can't even begin to imagine the stress that caused.

Peyton seems to be improving today.  She still needs pain meds regularly.  A physical therapist came by the room today to discuss ways to move Peyton - for diapering or transferring her from her bed to her wheelchair and back.  It isn't going to be easy - I'm not gonna lie.  Transferring could easily require two people.  Actually, it should.  There are a lot of concerns on my part.  I am so afraid of breaking my child now!!  People are nervous to touch her and I'm talking medical people!  That doesn't ease my mind at all!  Then there's the reassurance that this will happen again in the future.  The fractured leg and wrist are bad enough, but throw in a couple spinal fractures...that makes me even more nervous.

There is so much to take in.  I have been a huge ball of stress all week.  It's very stressful going home with this new situation.  Yes, going home.  Hopefully tomorrow!  First, though, the PT will have a meeting at 10am tomorrow with me and some people from her home nursing agency to make sure that everyone is on the same page as far as handling Peyton goes.  Then the hospital will arrange for medical transport home.  It will be via ambulance.  Not with attendants.  I have to be with her.  It's just a ride, but she needs to be on a stretcher.  Hopefully we'll be home sometime tomorrow afternoon.

Please pray for us.  We're all very nervous and stressed about this.


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