Monday, January 31, 2011

Sweating the little and big of it.

I'm a little lost in what to get bent out of shape with respect to Raquel's blisters.
The more research I do, I realize us stressing out over ever blister, is maybe obsessive.  Kind of like the new parent and the bowel movements of their baby. 
hmm, I guess we're still pretty interested when that happens and how regular Raquel is too.  Adding medication and GI tract blisters makes it all that much more important for Raquel.
Never mind...

The blisters come and they always have a direct point in time when and how they were created.  Some we don't have an answer for and we spend a lot of time second guessing what we've done.  If it remains a mystery I've adopted a useful saying
'Dammit Janet'. 
Somehow it makes all the difference.

There was a small fluid filled map of Italy down the center of her spine that has finally become less worrying.  Saturday evening it smelled and was very raw after two days or three days since it first appeared.  Now there is just one small spot that remains raw.  We originally left it to air under the silks as we do with all the other ones, but this was bigger then the rest and it was directly in the center of her back so it really didn't have a chance to heal.  As well some of the new scab grew into the weave of the silk, so getting it off was somewhat a challenge.  A little salt water and it was fine.
So I cut a circle of mepilex and put it around the wound then put a second piece over top.  We did that for two days and now it's fine to be free under the silks and breath and healing well each time we look.

But then Renata noticed her foot smelled a bit Sunday night.  Today during the change it was a little worrying as it smelled like a brewery.  Very strong and yeasty, the dressing garbage bucket sits just below the overhang of the counter and the smell stuck in my nose for an hour afterward.
I have to add that it's wonderful having the nurses around to explain why that might be and what steps I could do then to help.  I couldn't find any of the ointments we have for her at the time of the dressing change, as I had buried them deep and behind some other supplies so we cleaned the area the best I could.  She's had sweet smelling gunk on her feet before, but never a smell like today.  It's going to make the prospects of a full day of work tomorrow impossible as a doctor visit or long call will be in order.

Too bad we can't trust any doctor to bandage her up properly after an inspection has been made.


I had a problem writing of late, as some fairly heavy facts and thoughts have run their course through my mind.
The most difficult to digest was a fact Renata came up with the other day.  The oldest living woman with Raquel's disease is only 50.  I've read in many cases the average being in the 20's, but I'm a firm believer in that she has had an incredible start with her care and that's surely 1/2 the battle.  The other half is her will, spirit and the will and spirit of her parents and family.  That she also has in spades. So envisioning her well past her 20's is quite easy, but I was unprepared to hear 50 was the oldest of anyone on the planet, and this person has been battling the resultant cancers for years!

I couldn't help to become introverted with my thoughts.  The tendency for me is to be dark when I question or mull through issues I'm trying to understand, but this blog is read by a public many of whom I don't know.  Considering I have a shock effect for friends who know me, I find I really have to watch it here.

If you start in pitch black, then it must be light at the other end?  Just hope you can get there, I guess.

This was a few moments of bliss for me the other day.
I had both daughters sleeping on me, then had a few moments of Raquel checking for lice and bugs in Cordelia's hair.



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