Thursday, November 14, 2013


I struggle in part with a few of the decisions we've made for Raqu.

I'm always assessing her pain needs and her nutritional intake against almost everything.
It's hard when the warm blood and soft meat of a lamb tastes so good and Raqu is sitting beside me with fork in hand making a fuss that she feed someone.  I have to admit out of pure curiosity I've put a loaded fork in her face and asked if she wanted some?  She looks at me like a big joker and says the same every time.
'I can't eat that daddy'.

Is it fine to finally stop the morphine?
We're on to a smaller dose now and I quietly had her dose stopped completely for a few days.   In my recollection she's been without for maybe 6 - 10 days in her life.  I noticed no signs of withdrawal, but it turns out we met with our Pediatrician shortly afterward and she pointed out that babies due to their fat content can actually hold the drug in their body for some time and that in a few days it might start to effect her.  So Ren had her back on a minor dose.
It didn't end up mattering as within a day or so she was back with choking and night time breathing issues.
This latest round was fun as it sounded as if a skin flap was at the edge of her epiglottis.  Every minute for hours she'd cry, fuss or squirm to make sure it stayed open.  While I listened helplessly in horror to the fluttering sounds with a vivid and 3 dimensional imagination.  Every fuss I'd wonder if it was going to be an ER visit or worse.
Eventually the sounds subsided and sleep came to us both.
Ren and I were kind of able for the next part of the day forget we had EB.
Well, maybe that's because she was left with a nurse for the day and it wasn't our problem (of sorts).

Cruel, but in a way the only way to survive as I see it.  Separate as quickly and for as long as possible, so that the strength is there for when it's really difficult and needed.

I am getting that this attitude and wander to water isn't marriage friendly even if it's a useful tool in the EB battle.
Between the canoe and that pile are a few hundred salmon very interested in my fly presentations

A few giant blisters and back we go, the routine in full swing.
Or will we?  It seems Raqu has become so much more aware of her body and suffering and ways to manage it.

We did a little Emergency change today on a foot
When I know there is something like this lurking below due to either her telling us or finding it by pressuring various parts under her bandages, hopefully to find a little pain or an unnatural softness.
I can tell you that this is definitely easy to spot under two socks, her silks and 4 layers of bandages.

This time we didn't have the time to dose, so we worked with our various distraction techniques.
The main one is that she blows bubbles in the air (pretend) and her favorite is to blow it at me so no one can hear me once the bubble has covered my head.
I then give orders and directions but nothing can be heard by me unless she pops the bubble.
She giggles and laughs and asks 'what you say?'
This one was fairly easy.  She didn't fight like she used to only a month ago as this would bring out max anxiety and max screaming.  That's not to say she didn't look me straight in the eye while her little body shuddered for a moment but to ask in silence 'why the hell are you doing this to me!?!'
Do I tell her it was her sister's fault for not paying attention - AGAIN!!! Kneeling for the second giant blister in a row on her foot.

The questions.
Feed her some food other than Pediasure and yogurt and run the risk of plugging her up and scratching/scaring what is likely the most important tract in her body and last bastion of mucous membranes likely fully intact?  I'm starting to understand that if we screw that area up for her, then retaining nutrition will be a battle tougher than protecting her from her sisters knee and life's abrasions.
Remove most of her underlying pain medication and possibly make her old before her time?
Dunno.  I see something in tortured souls and the eyes showing the weight of the world.  I'm of a philosophy that pain is dystrophic to.  She's full of feist and really the only time I see her break down for large stretches is when she can't use her eyes from some type of abrasion.  Like a jail.  Locked inside her body she goes dormant and simply waits it out.
But there are the other reasons to do the other options that many do in the world.
Time will tell and I guess this is the really evil part of EB.

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