Wednesday, May 16, 2012

Journey update

The update on Journey is that we are hopeful.  The trauma surgeon also experienced in infection who was called in to consult on Journey's leg does not believe her leg is infected.  He recommends that the current nail in the tibia be removed and a larger one put in.  If when he opens the leg and changes his mind about whether or not the accumulated fluid is pus he will will place a nail that is galvanized with antibiotic which would remain in place for over a month when it would be removed and another permanent? nail would be put in.  I think with the at least three minds that have been pondering the leg for the last five days there is some dissension in the ranks and so hopefully once the leg is looked at again things will be clear.  At this point this is great news from what was first thought on Friday.

Journey's underlying syndrome is trichorhinophalangeal syndrome type 1.  In the literature it really has more of a skeletal impact though the anecdotal reports from those living with it implicate it as more of a multi system disorder.  In posing the question on a mailing list I learned that those with the syndrome who have fractured bones all have had delayed bone healing.  This has been the case with Journey for sure however there has been lymphedema and now this infection/noninfection.  We are eight months past the fracture date.

Look!  For at least a few short minutes they weren't trying to kill each other!

Surgery may or may not be next week.  The doctor doing it is an adult orthopaedic surgeon who will come to the children's hospital to get the job done.  I'm sure he has a pretty tight schedule and having to treat a patient outside of his hospital might take some time juggling not to mention our hospital which has been chocoblock full.  At any rate the job will be done and I am hopeful the timing will be perfect.

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