Monday, July 23, 2012

The importance of collagen 7

In moments of my tragic decision making skills I'm reminding how Effing bizarre and fragile my daughter is.  It's not that I need to be reminded of this while riding my bike home semi drunk from a party at 2am and have my nearly flat tire give way to metal rim on pavement while traveling fast down and up around a corner.

It was a fairly exciting moment when I felt the tire not exactly go where I wanted it to go.  I caught a glimpse of a few sparks as all balance was lost and gravity and inertia did their number on me.  Dressed in a nice short sleeved dress shirt and jeans I hit the pavement nearly instantly and skidded to a stop after some distance.  Usually I'm wearing armour, gloves etc when ripping through our forests, but a pleasant ride home at night down the hills of NV didn't seem like the occasion for that level of protection.
Anyway, after dusting myself off and making sure nothing was broken, the burning pain of road rash on my forearm flashed.  Some how the fabric of my shirt was hardly affected as was the skin directly below.

There's the thing.
Raquel falls over the threshold of a door and she looses all the skin on her knee and elbow.  At about 36" in height it's not far to fall, yet she's headed for two weeks of discomfort.  From Dad poking her with needles to relieve surface tension from ballooning skin pockets to resultant - raw, bare and open sores to the dry itchy healing skin flakes.
Or where she didn't pick up her foot high enough and falls to the carpet skinning her cheek, on that aggressive and evil texture to the collagen deficient.
Jakob and Raqu watching Coraline yesterday

Me, I'm nearly invincible by comparison as this is all I get after hitting the asphalt with bare skin at about 40 km/hr.  Well today there are some deeper bruises and pains showing up at many areas of my body not initially connected to where I though most of the damage might have been.  Must have happened in the tumble and effort it took to keep my melon from cracking on the pavement too.
never mind that......

Wednesday, May 9, 2012

Ballooning the Esophagus

It's coming.

Those decisions that need to be made.
You know, the ones that seem so difficult, but in the grand scheme are really quite trivial.

It seems Raquel's trivial moments are when I look into her eyes and try to differentiate between getting right into panic mode or just watch a benign little cough.

This morning it was back to the thick blood stained mucous.  Her coughs started out small enough.

At least we basically slept through the night.  Ren got up and half asleep I wasn't even sure if it was for Raquel.  A short time later I heard her call for some help.  It didn't sound too urgent so I closed my eyes to gather just another few seconds to reset my brain so that I was ready and capable of dealing with what ever was needed of me from yonder, but the second call never came.  I tightened my eyes and relaxed into a long awaited deep sleep.

Like I said the morning became very stressful and while I watched the clock turn 15 minutes past when our nurse was to arrive I realized I should have probably checked the messages. Thankfully Dammit Janet was able to help out for a few hours, except I'd already been lost to frustration, helplessness and stress for the day.

It culminated only moments after Janet took hold of Raquel when I couldn't find a DVD or CD or something and proceeded to absolutely loose my marbles and pulled a little hissy fit chucking empty cases wherever the wind and momentum would take them.


Nice that I call a friend in to help and I go ballistic with a few CD's and covers within minutes of her arrival.

I'm thinking this will be a reoccurring theme for the week.  Me losing it in milliseconds.
The intubation procedure of putting a breathing pipe down into Raquel's trachea was the straw that broke the camels back when Raquel went from being able to eat fish and other foods to not being even able to drink rice milk once and a while.

I don't see any other way.

Even though I have complete fear of another horror show as was with re-bandaging Raquel post G-tube surgery? 

I can only hope the anesthesiologist learned a lesson of what not to be repeated.
I know the crew at the hospital has done a surgery of this type a short while ago, so I hope no one is on holiday, retired or taking a day off.

Haha or Renata and my marriage will take a few day hiatus.

Thursday, April 26, 2012

Stricture apparent

We had Raquel do the barium swallow.
Not exactly a procedure I was fond of.
It ended with her choking and gagging up chocolate barium screaming under an xray machine while three of us tried to keep her still.  Of course three blisters resulted at her elbow, armpit etc.
It worked though.  I was able to rest easy that my thoughts of a severe stricture in her upper esophagus was correct.
Rest easy I say.....
Rest easy that there is a decision to make of whether or not she actually needs one....
An esophagus that is.
I went over some of the options with one of our nurses "Mana" as Raquel puts it.
Another intubation, is it really worth it?
Just so she can eat/drink ice cream, water and yogurt?
Certainly regular food is never going to happen as the issues they cause.  We didn't even get to 15 months and she was in this situation.
In my opinion we've dodged many bullets to get her to this point with virtually no esophagus.

I'm going in no apparent line here.
I can't think about it anymore today.  Back to ignorance till her next GI meeting.

Monday, April 23, 2012

Now that Raquel has turned the corner.

Renata and I are tired and I'm a lot crusty around the edges.
I have a headache and maybe Renata is just letting me be the moody one for a day or so till she takes a turn.
Raquel was great today, although past dressing change I did my best to avoid her.  Saving my energy for the scream fest tonight as it'll be my turn.  Ren slept with her on the couch after I had enough at about 2am. 

Not walking much, but that's to be expected.

 Raquel hamming it up between feet.

 Here it's obvious how her toes have been deformed since birth.  I don't understand why her big toe was stunted with the next two.  They were like that from birth.  I asked the Dr's about it, but got little answer as if they were thinking "you got much more to worry about than toes buddy".  Also after this round of foot and hand blisters it's very easy for me to see how quickly her webbing can and will likely happen.  Those three toes above are a mess and the pad of her foot is looking quite odd.  I've just noticed the splinting material I've been using is setting less and less into her webbing ie it's starting to not exist.  The other foot is fine (kind of).  shh don't tell Ren I think that.
I sent her away when she came in the door for today's dressing change.  Ignorance is bliss.

It's easy to see why she's been going out of her mind with the itch of late.
These shots are after a good soak prior to re-bandage.
I'm starting to wonder if my technique has reached some limits with her.
I don't think so, but it's hard not to think about the whole procedure.

Tomorrow is Children's Hospital and a pre-check on her esophagus.
I'm very nervous.
Not about going or the non invasive procedure (I'm told) but more about what I expect they'll find.