Wednesday, April 20, 2011

Like Clock Work

As soon as I say, things couldn't be better it all spirals into chaos.
I've had a few dressing changes when I've not coped well with the stress, but today's brought me right to the edge. 
Renata had a feeling this wasn't going to be good and did her best to track down some more help from our nursing pool, hopefully to fill in some extra hours we're owed.
Renata was off to a Board Meeting for Cordelia's school and my mom was called in for reinforcement.
The hard facts with my mom helping is that when things go sideways I don't have the patience I should for her, despite the the fact she's there to help.  Why she keeps coming back after me acting like an ass I'll never know.
To start Renata had two hours of pure sleep last night that took place before the clock had actually passed over to the next day.  My night didn't involve much more pleasant sleep.  We took turns in the living room settling Raquel down in half hour blocks.  Raquel's morning wasn't much better, but at least for my sake I was off working staring into space as some major issues came up over a job I spent considerable time on in the previous few weeks, luckily the blame was spread fairly evenly around the office. 
Renata eventually took her off for a walk to get Raqu calmed down. 

During the dressing change and Raquel's violent thrashing we dealt with three separate mouth blisters not including the popped deep skin flap at her uvula that flapped like a flag in a hurricane during her protests and yelling.
Coincidence that our Plastic Surgeon the day previous gave me some very useful tools to get in there to pull and snip those flaps.  I was too chicken to do it as we don't really have a med on hand to calm her down enough that we won't make more of a mess keeping her mouth and head straight for such an invasive operation.  Plus it was clear her breathing wasn't impacted.  She never relented for almost the full hour plus and her half cries of F#@& off!!!! LEAVE MY HANDS FEET AND MY SORES ALONE!!! (Would she have my language skills).
I know the issue is her bottle.  We have yet to come up with anything that works, other then feeding her solid food full time with a spoon.  I get very pissed at myself that we haven't made it more of a urgent issue when times like these erupt.
I get crap for the hands often that the techniques aren't working.  In our recent trip to see our plastic surgeon he couldn't really give us any more info or techniques that we weren't doing already.  Seems one of Raquel's major Commenter on this blog is about the best tried and true informant we got.  Problem is a continent lay between.
I'm not sure if it's right that I fire back about the mouth issues considering much of her feeding and nutrition is Renata's gig.
Anyway, it was so tough I didn't actually finish getting her hand wraps on as I usually require.  It was more of an emergency layer that I'd expect from a fumbling ER staff.  (I'm not kicking what they do, just seen some bad wraps in the past (Cordelia's broken arm, my broken thumb, arm etc.).
I'm only vaguely worried they'll be off if she freaks out for any extended time this evening or next morning.  Only because my circuit board is fried.
She finally just woke from 2 hours of peace.  Started where she left off.  I still can't cope from the damage done during change. Renata has to.
Her throat is coarse and sore.
What a day.

What I can say is my friends are great.
I sent off a couple texts while I was in shut down mode after the change and Raqu asleep, mostly out of self preservation that I didn't walk into my garage and destroy what ever I could get my hands on out of pent up rage!!  Mike shows up with two beer and some salad.  Nice!  He did so despite being dead tired from overwork and his own family life, but not too tired from helping out. 

At the moment Raquel has blood all over the arms of her brand new silks.
She can't actually scream any more, even tho it sure looks like she wants to.
My shift will start soon.
I really hope her break through dose and Tylenol will work.
Tonight I hope we have

Joy. (sarcasm)

But I'm sure we'll have


It would be so nice, if it were just the final push for her teeth that should be showing about now.
If it weren't for her kicking her feet and rubbing her eyes I'd let her have at it like we did Cordelia.  Still can't leave this girl alone for 30 seconds of a crying fit.  Damage can be too great and the cycle continues. 

Tests of a marriage.
Our other family member was exceptional, Cordelia the whole time was drawing contently and the dining room table and only bugged me for a glass of water.  When I passed it on with Aquafor grease she ran away disappointed and still thirsty and wasn't seen for another 45 minutes.

Elbow at change time

Elbow this morning

After an hour from when she woke she's still at it....
I still can't cope.
Renata is a star.

Another hour later.


1 comment:

  1. Hi guys..just checkin in on your beautiful little girls! I know dressing changes can be painful for both our kids and US as their caretakers. I have hit my breaking point many days with the stress of it all. So, you are not alone. I hate when my son says "mommy you are hurting me." sometimes it goes so well and easy and other times, it is such a struggle and just when everything is looking good, I unwrap him and find it's all a disaster again...So, all we can do is take a deep breath and know what we are doing is really HELPING them. EB is unfair..scream when you want to, cry when you feel the need and savor every happy peaceful moment you get. That's all we can do! :) Hugs to you all...