Wednesday, September 28, 2011

Writhing Sleepless Nights

Raquel was off the handle last night and has been for a few nights.
It is increasingly becoming an absolute struggle to keep her from ripping apart her feet and face from the squirming and rubbing.  Her strength is getting quite impressive.  I actually noticed the other day that she has a six pack of abs.  Didn't think babies could have those.  But when I think of how much strength I need to hold her still, her strength pushing the other way is doing it's magic.
Ren and I took turns wrapping her up the last few nights and holding her as tight as possible for over an hour each outburst.  Till what ever it was, past.
The sedatives played a part, I think, I hope.
We also set up the G-Tube and gave her a late night feed.
Which is becoming common, again. argh...

I've read about the extra calorific intake kids with so many sores need and it's becoming clear to me now why she's in that boat.  She currently has so many open oozing wounds it makes sense she'll need more to replace all that plasma and blood. 
Getting it past her throat is an issue.  I'm not sure it's a manner in which we can use with any regularity anymore.  A large mouth feed in the day has ended up resulting in late night issues and gurgling.  We're also not sure if it's saliva that's gurgling, broken skin flaps or if it's just that the saliva can't pass her esophagus from something going on further around the corner.

Half way to work this morning I got a call from Ren to come back as her left foot dressing was kicked off.
DAMMIT...
I don't feel the rigors of changes like a few months ago anymore, but losing a morning of work due to these types of things is irritating and difficult to catch up.  Especially if it's to be a draining change, full of screaming, puncturing blisters, tending to extremely raw areas while trying to be nice to all the other people helping.
Lucky for the paid ones.
They can quit when it or I get too much.
The loved ones, duty bound must suffer with Ren, Raquel and I.


I received this in an email from a new and valuable friend whom is also mother and wife.  It explained how to read into what a wife and mother is actually saying when they say 'Do not come home at 3am", (as detailed in a previous blog post).  She also sends Renata and I many useful advice tips on EB as her son also has EB.  It is very likely that nearly every question and philosophic void Ren and I come up against will be run through her. 

My husband is just like you..I always tell him don't come in at 2am....He thinks victory is 1:59 am...He doesn't get it..Just for the future...."don't come home at 3am " is sarcastic for be home by midnight...and if you are going to be drinking, it means 11pm....  You need to learn the female language.  :)

I have read and mildly understand her advice but I will likely remain a man with selective due times.
As in, when fishing and I say 2 pm I actually mean I'll leave the water shortly before two and if it takes an hour to drive home that's it.
I guess somehow with relationships there's finding the happy medium.

Trust me, when I test Ren's patience "for real" (to borrow Cordelia's favorite phrase) I can behave, kind of.  I tell her I love her everyday, usually she replies with the same sentence.  Sometimes I hear it, unprovoked (?).

In fact I encourage rebellion at home for certain things, Cordelia's to a lesser degree.

Raquel was happy this morning.  I don't get it.  We just played 'hut hut'.  Which is when she does a try pod and passes something to me through her legs like a football center. 
She's in the bath, I await the rebandage.
She's an oozing bloody mess.
But happy.





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