Saturday, December 28, 2013

Holiday Wave

Raqu has been very good for the most part during these weeks.
There was the day which was out of her control, where she limped quite badly and we decided to do a unscheduled dressing change.  There was a miss in the communication for what amount of background pain meds she was to have on board, as her bath takes exactly the required time for them to take hold.
It was a tough moment peeling back the visco paste bandage and the mushy purple balloon pushed the material unnaturally from her foot.  It covered about 80% of the top and instep of her foot.

After a couple seconds of picturing full on chaos and the obvious struggle moments away we decided to try the heavy artillery on her that had not been used since a Day Surgery visit at Children's Hospital.  I was nervous to try the 'Special K' as we are very aware of how strong the drug is.  I do admit for Raqu's sake it shouldn't have taken so long either as at least two other occasions surely required it.

After a 15 minutes wait I started the procedure of cutting at the large chunks of flaky skin on her somewhat good foot to test the stormy waters so to speak.

She was not impressed.  She kicked and squirmed despite moments later hallucinating that she was catching stars just above her head and giving them to us.
Once all was said and done she didn't shudder in pain and she wasn't bitter at me for making her suffer so it was a success for the most part.

We reduced the dose by 15% than what we'd agreed in the Hospital and I learned the soft way I should do as suggested as it was still not an ideal DC, considering she's to have many many many more of these.  The good part was that within the hour she was back to herself bouncing around regardless of how her feet looked or felt beneath the bandaging.

The next day (Christmas Eve) was rather interesting as we shared our dressing procedures with a new family still in hospital with a baby that appears to have EB.  Unfortunately for them our EB reality switch wasn't set to mute as few hard subjects came up that went a little too far for our new friends.

Ren walked into the middle of a conversation which was only intended as a note on Herlitz Junctional, but Ren went a little more into depth.
Coco hearing this went on even further despite me telling both of them to stop talking or change the subject.  Yet they went on and explored death and poor Tripp.  I was a little enraged at them for that moment, but knew it was my fault for bridging the subject in the first place.  I tried to keep my head down and let the tears well and fall from the young couple as undisturbed as possible.

The poor family.
If having your life shattered by the potential EB BS on what should be the proudest life altering day and or weeks of their life wasn't enough, we are the ones to unwittingly show them an even darker side of this disease.
I guess better us than the internet???  I'm hoping anyway.

The best present given and received in our household was the one Coco got from Santa.

I've always been a very big fan of Roald Dahl.  So much so that if Raqu had come out a boy she'd have been Roald.  Believe it or not it wouldn't only be about my devotion to the writer genius, but the fun of listening to Ren's ESL and my reappearing speech impediment struggle over Roald for a lifetime. 

Anyway, I bought her Matilda.
I hadn't come across this book before as my childhood and ongoing pre-adulthood was only enlightened by Charlie and the Chocolate Factory, The Great Glass Elevator and the Fantastic Mr Fox among a great many of his short stories more in line for adults.

As I read the first line and paragraph aloud to Coco the world seemed to tip.
Everything about how I saw the world made sense in a sadistic masochistic humour that must have spoke to me throughout my life time by those other books.

'It's a funny thing about mothers and fathers.  Even when their own child is the most disgusting little blister you could ever imagine, they still think that he or she is wonderful.'

After reading a few chapters I couldn't wait for Coco to nod off so I could indulge and go much further and not wait painfully for another day or week for the next chapter and page.

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