Tuesday, February 12, 2013


If I could narrow down the list of things that are very difficult on this journey, I would have to say that the worst feeling in the world {as a parent} is watching your child suffer - whether through illness or pain.  Nothing compares to the horrible feeling of watching your child suffer, screaming in pain and watching her in agony while being completely and totally incapable of verbalizing through words.  Nothing.  I honestly am not sure who has cried more - me or her.

right leg - note swelling and bruising of knee and leg
We came in to the hospital through the ER on Sunday, unsure of the cause of the swelling in her right leg and left arm.  Fortunately, one of the residents that night have the presence of mind to order an x-ray on her leg, as that revealed the startling news I shared yesterday - that Peyton had a seriously fractured tibia.  They ultimately ordered a skeletal survey rather than just an xray of her arm.  Her foot xray revealed what could be a metatarsal fracture.  However, it wasn't clear - it could actually just be some sort of defect or deformity.  Whatever the case, it is there.

The skeletal survey was done yesterday afternoon.  It is essentially a series of xrays examining every segment of the body from head to toe.  If the fractured tibia wasn't startling enough, this survey also revealed a fracture of her left distal radius.  Left wrist.  Ok, I know she was experiencing pain of her right leg, which I thought was coming from the chronic hip pain.  While that may be part of it, it was certainly because of the tibia fracture.  But I can tell you for certain that I do not recall her ever {how many ways can I stress "never ever ever" without sounding like a Taylor Swift song??} having any pain in her arm or wrist.  Ever.

The Orthopedist came to see Peyton right before her skeletal survey.  Very shortly after she was back in her room, another was back in the room with someone whose title I forget but I'll call him the "master plasterer". He's the splinting and casting guy.  Peyton's left arm and right leg have been splinted now.  They will stay this way for three weeks.  We can't get them wet.  She can't be bathed.  Only if we see her fingers or toes turning color can we rip everything off for circulation and rewrap.  I don't think I'd like to be going there!  Basically, there is cotton wrapped around, followed by a piece of something dipped in plaster which is affixed to the appropriate spots {bottom of foot up to back of leg just above knee, and back of arm to the fingers} to stabilize everything.  Then it's all wrapped in cotton again and then the outer wrapping.  In a few weeks, we will see Ortho again and they will assess, but probably will cast her leg and arm at that time.  If that's the case, I'll have to figure out how we can do a virtual cast signing for her!

Seriously...how comfortable does that look??  {insert sarcasm here}  Poor baby.  I feel horrible for her.

The Orthopedist came back to see us after this was done.  In a nutshell, her bones are really bad.  She hasn't been tested for bone density yet, but her bones {via xray} look really bad.  Really thin.  The doctor assured me that what happened is not unusual.  She's got multiple special needs.  She's on seizure meds.  She's tube fed.  She has this severe copper deficiency.  She doesn't stand or walk or do things that would promote bone development.  She has many many strikes against her when it comes to bone development.  This is not unusual or even unexpected.  In addition to these fractures, she also has two vertebral compression fractures at T2 and L7.  He said that we needn't feel guilty about any of this.  It just happened.  He said therapy could have done it.  Putting her pants or shirt on or taking them off could have done it.  Whacking her hand on her crib rail could have done it.  However and whenever it happened, it didn't take much effort.  That said, he indicated that this would not be the last time this happens.  And when it does, he said please don't feel guilty - it's not our fault.

All medical evidence seems to be indicating that it's related to her lack of bone development.  However, she came in as a child with multiple unexplained fractures.  If all of the above hasn't caused enough stress.  Yeah.  I'm not going there right now.

On top of all of this, her g tube clogged last night.  She has s g-j tube mickey button.  It's all in one.  The feeds go into the j port and they go into her intestines.  Meds go into the g port on the side and those go into her stomach.  The g is clogged, so she couldn't get her meds.  The doctors gave clearance for them to give them through the j port, but meds don't absorb as well when not in the stomach, so pain is a bigger issue this morning.  It's not fixed yet.  They are getting with Interventional Radiology.  I hope it doesn't have to be changed out.  She just had it changed it on Friday!  They are supposed to be good for 10-12 weeks.  Clearly we're not that far out yet!

Waiting on that to happen today.  Endocrinology is supposed to come see her as well regarding the bone issue.  They'll likely do a bone density test.

I will report back later, but in the meantime, would appreciate your prayers for Peyton's pain.  I am curious/concerned about how well her healing will go since nothing else seems to be done normally.  I am also worried about future injuries and missing them or just the pain that they will put her in.  This is obviously a very new and challenging situation we are being thrust into.  Pray for all of us!


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