Tuesday, November 16, 2010

Dressing Change @ 4 months

Each dressing change consists at this point of renewing bandages and popping new blisters should they occur under the dressings.  Each foot and hand is redone after a bleach bath @ 5%. Our kitchen therefore smells like a public swimming pool every Monday, Wednesday and Friday.  MMM wonderful as dinner is made often shortly afterward.  

The web space of each finger or toe is kept apart with Mepilex Transfer gooped in Aquaphor and Viscopaste strips to preserve web space and range of motion for later in life.  We were first told that at about 2 years of age Raquel would be able to go free finger, free toe, as her dexterity would be better.  She would in theory be at a level of understanding of how to protect herself.  

Not so, as a recent dressing change with her Plastic Surgeon changed that dream to 4 years.  He asked the question of us and the other doctors and nurses present.  Four years of bandages or 54 years of no mobility?  I let the question of "only 54 years?" go, pick your battles, (I think he might be 54, he could take the O.L.D. poke but I'd probably lose concentration in the task at hand, as well it's hard enough to perform at top form when you have a room full of pros watching you and commenting one way or another about this or that, as a loose wrap at her instep will certainly produce a large blister by the next change).  Then came some comment that toe web space was of little concern. Another one I let go, but Ren didn't.  I listened to that conversation while wrapping the various layers, slipping in and out of their conversation.  Still I'm going to do my best to keep those little toes apart.  Two came out of the womb fused nearly to the top and a few others seem stunted and deformed.  

Raquel's feet look terrible on the best of days and some larger blisters are forming up her shin as her mobility increases.  We are actively trying to see how to keep her hands from retracting into a club, and have steady contact with Children's OT department, we have some small plastic splints made up to hold her hand in an L shape (safe position or something like that).  A larger one was made that goes most of the way up her forearm and was doing great amount of damage to her legs and face due to all the sharp hard edges, even under lots of foam.   

Inertia and the constant thrashing of a 4 month old.  Hunger, the itch, discomfort, bowl moments etc. can all create a sudden movement that will cause any level of blister and resulting wound anywhere along the body exposed to a flailing appendage.  The OT department had also made some fleece booties, which are now too small, but were effective for a few months.  

I've revised the cushion layers in her wrap with little pieces of foam.  They are wrapped into the upper layer of conforming bandage and have been good as a hold over.  I'm thinking of finding some of Coco's socks she won't immediately miss and sew some of that foam onto them.  Moon boots anyone?  

Anyway, this video above is a recent hand change of parts of the Viscopaste layer.  

Nice to see her relaxed during the changes.
Often enough it's anarchy.  Usually a three person job, screaming and enough pain of various types for everyone. 
We've only had four or five changes in this time where we've only had two to do a change.  Luckily those changes had been great.  It's hard to predict how a change will go, but the previous days events start to make sense. 

In general the changes have been trending in the right direction, one step back usually in any week period.  Rare that we'll pop a blistered area past two changes. 

Maybe we are all better equipped to deal with the situations.  

Maybe Raquel is just that smart to deal with it.

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