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.

Christmas.
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.




Monday, December 16, 2013

More expletives

More Expletives?
Not me however.
Although, it does make for some self awareness when considering a few of my buddies whom say nary a coarse word around their children and when hearing their children talk or speak it's clear that the clean path is rather shiny.

Raqu and her sister have a big infatuation with Katy Parry.  Ren and I are forced into listening to her songs every day off VEVO sometimes over and over and depending on Raqu's state or requirement to not move.
For the most part I now know nearly every chorus and many words and can keep up with the kids singing on a few of the songs for a moment or two.

I've always had a thing that most songs are more about a feeling and rhythms for me than the message.
I could never recite the lyrics to many songs I've listened to 100's of times.  Then if I do it's certain I hear things much different than what is sung. 

Creating my own reality that usually makes no sense to what the song is about.  I probably listened to too many Bob Dylan songs in my teens to think anyone actually sang about anything.
Speaking to some French girl
Who says she knows me well
And I would send a message
To find out if she's talked
But the post office has been stolen
And the mailbox is locked

Raqu's moment of fame comes after Ren starts to sing-
You change your mind
Like a girl changes clothes.

Then Raqu excited to join in carries on.
Yeah, you, PMS
Like a bitch
I would know

Ren and I just stopped the world seemed to go on pause. 

Not sure if I think she's the coolest kid in the world or I'm the worst dad in the world..

Anyway
Fixing her foot wounds from last week.
They were getting a little stinky and she was suffering from the itch....
Below is a photo doc of before and after today's DC.
As tough as I think I am with her wounds and dealing with new and old ones.  This was still tough, cleaning this up and edging all the dead flesh. 

After 4 days it's great that she's heeled so well and the epithelial tissue is looking healthy and strong.






Sunday, December 15, 2013

Wednesday, December 11, 2013

A little bump

It was so long that we sailed along with tiny blips here and there.
Now it's one after another, yet her resolve is really making me so proud of her I can't describe.

In the last month we've had a week or so of choking, four or five days of eye issues, three days of smeared face wound and some troublesome care decisions, with the bar set somewhere around a coming dilatation of her esophagus.

The most recent smeared her face incident miraculously healed in record time but for the strange piece of skin that healed very taut just under her eye to the base of her nose.  After the second day when the swelling subsided and my biggest fear that the fresh wound at her eye lid would attach to the fresh wound at her cheek while she was sleeping didn't happen, we noticed that the one large patch of skin that had stretched across her face reattached and maybe, too well.

In my mind, I pictured my big thumb smudging at it so it would release and not pull between the periorbital and cheek to deform the area forever...  Gladly reason prevailed and I impatiently waited it out, but it still looks like it's deformed, subtle, but I see it.

By the end of a week exactly, her face was as bright and pale as she would have been previous this injury.  The problem is that she has since found a way to smear a couple other marks on each cheek.

Back to the irritating smaller blisters and wounds that I can handle as an EB specialist.
Yet each one, still extremely troubling as they add up.  It's that damn Dystrophic word attached to her subtype ringing relentlessly in my head spelling fear.

I was recently scolded for my use of expletives.  I'd very much like to use one now to release the frustrating and unbearable sadness that wells at times.  Just a two letter acronym?
So much pleasure.  So much I don't have to write when typed in a millisecond.

Anyway.

Yesterday we noticed her limping earlier in the day.  Ren was busy, I had to work, our nurse was not able to do a change without me and of course Raqu had a Dr. appointment at Childrens in early afternoon.  By the end of the day in the time before the nurse was to leave Raqu topped it off with a long and extended nap.  When she finally woke our minds were not into a change, as I soon slinked off to bed, but as Ren changed her into a clean pair of night silks, she notice some large wounds at her fingers.
Laying in bed I attempted to tune out the conscious world, yet Ren's voice kept breaking the peace with uneasy demands for my immediate presence.  It took some time to mentally prepare for what awaited and it was a total put off that I wasn't either on a boat or in a river, even it it was 12am...

Raqu was very docile, extremely cute and talkative when I got to the scene. In fact but for the moments shortly after she awoke in the morning due to eye pain she was a delight all day long.
I saw the tops of her fingers poking through the mangled dressings and in the light I could see right through her ballooned skin to make out the silhouette of her finger below.

I can't begin to estimate how long those bubbles were growing below.
Other than her eye issues that kept her in darkness and crying in the nights till we caught back up to her pain we couldn't tell she was in discomfort.

Yes, the danger of medication.

But as we were up and slicing balloons it seemed a perfect idea to do the full deal and check out her foot.  I touched and squeezed it to see where she might be in pain.  It felt squishy, but I wasn't sure it wasn't because her dressings were a running past due for a change or if my metal state was to be trusted.  She didn't wince, only that she pulled away and told me to take a hike. This is very much a typical reaction to the prodding and poking of "blister or not to blister"?

After we took off the top two layers it was clear that we were in for it.  Buoyed by the fact we were not at all prepared on the medication front, but we continued.

Raqu continues to amaze.

Ren did many of our distraction games with puppets and bubbles while I poked, cut and sliced at her feet and hands.  We certainly had moments where she shivered and shuddered in pain, but she'd push her head deep into Ren's neck and close her eyes clenched out the pain and found her way through it without the loud screaming fidgety fight I expected and have had to battle through for nearly the entirety of her life.

Clearly Mama rules and her nurturing presence key to many troublesome moments.  I don't have much of the nurturing aura due to how I'm pressed to do the most painful care actions on her skin. 

Fluid and blood splattered the floor and once we'd gone over her body in near record time.  Moments after she was clothed and settled she was out for a long quiet and comfortable sleep, for us all.  I can't even begin to count how many times my expectations of a situation with her EB has left me scratching my head.  But any extra sleep and ability to relax the brain I don't for a moment take for granted or waste time wondering.

Really, expletives get in the way of a wonderful family experience?
I jest and yes I'll try not to swear,
much....