Monday, December 27, 2010

Typical Foot Blister of The Large Variety

Oh Joy.
Not sure how this happened.
There was the start of something last dressing change.
I was very surprised it grew like this.  We've been chalking her displeasure up to teething of late.
I thought I'd show a little video of how the operation looks like.
The back ground bouncing sound is Cordelia playing basketball with our yoga ball; in the living room, of course.  The last comment before I was cut off was "we can blame that one on Andrew".  He was to busy looking good for the camera. haha..
Over all.  I'd say this went very well.  Raquel was calm and fed right through, less the moment I pushed the fluid out of the blister.

Raquel blowing bubbles (top side)

I've recently discovered a super star kid with EB.  Talk about your courage.  I like the part where his dad told him he was a good kid because he didn't wreck anything when he was young, yet his glasses made it under the tire of a car.  Back to my future visions of Raquel.  Just a little before the mysterious woman in a veil is a happy kid full of life like Zack.

Oh yeah.
We've had a bout of a mild version of pink eye in the family.  Tough wiping guck out of a kids eye you don't dare wipe guck out of.

Hopefully this little photo montage didn't start it all over again.

Wednesday, December 15, 2010

Mouth Blisters.

Today was something special.
The blisters hidden under the bandages foot and hand were looking fairly well.

Yet Raquel was in painful fits.
She cried through most of the change, it wasn't till near the end when we noticed the giant blood blister inside of her mouth.  It basically took up almost the entire upper palate to her right.
When she lays back the blister flows to the back, there it's hard to access or even notice.
I tried to get it with the needle as she was in a sitting position.
That didn't work as my fingers couldn't get past her lips.  So we extended the needle with an oral syringe.  My dexterity was a bit off as I didn't feel too much of a connection to where the end was.

I missed judged the tip a few times puncturing her lip and a couple spots at the back of her mouth.  Fine if you're an acupuncturist and you're thinking of relieving pain that way...  My terrible aim only added to our pain and suffering.
I finally laid down on the floor and Ren held her over top of me so that the blister would flow to the front of her mouth and onto her gums.  With my head lamp I was able to see in and lance it a few times.  Although it was basically hanging out of her mouth in that position.

Tonight was Coco's Christmas concert, that was to start a half hour after the change.  Raqu went from the dressing table to the car seat, within moments of the lancing and buckling of the seat Raqu was out.  Talk about your instant relief.
She watched a little of the concert and went slightly spastic during the clapping, but generally loved the action and music.  We've hardly heard a unsatisfactorily peep from her since.

I felt slightly guilty about my last blog mentioning the wine we received at one point with our dinners.
For those who are helping out with some dinners for dressing change evenings to come, I wasn't making a call out for alcohol to medicate us of sorts and smooth out some stress.  We can deal well enough.  The dinners are amazing enough.  Please don't feel it necessary or the norm.  Although, today, the wine will taste soo gooood...  My wits and patience were shot, low blood sugars or what ever.
I didn't quite get to say 'Dammit Janet'.  Could have, but I'll wait till the moment is less stressful for us and our new nurse.

Raquel just pipped up.
Feeding well.
time for a glass of wine.

This little bit of info didn't let my day go smooth either.

Patient 13 coming-home?

I unfortunately found it hard to be happy for this poor boy.  Probably more to do with our household and a few of those sentences written. patient 12 and 14. 21 years etc.

I gotta stop...
glass of wine.

Back to see the crew of Doctors.

We decided not to do our typical dressing change at the hospital today.  Last time we came home with one of her largest blisters ever.  Hard to focus with questions and ideas on her care while concentrating on a moving target.
Pain issues and over all comfort was a main area of discussion.
Where is the line between fussy moments with a baby without EB and one with EB? 
In a annoyed second of hunger she can produce a dime sized blister as she raises her arms quickly to her cheek or eyes. She has a Dr. Jekyll and Miss Hyde thing going on now.  Her obviously dominant right hand has turned the right side of her face into the surface of the moon, her left side is still quite angelic and not much different looking then Cordelia at 5 months.

In the last week most of her sessions of pain or discomfort have been a result of either mouth blisters or her continued and spreading sores on her feet.

The ones in her mouth are quite scary.  She was choking a bit last week.  I could tell the water in the blisters was rolling back under the top layer of her tongue and past her uvula.  For a few hours one day she'd cough her EBM up and cry in pain.  I knew she had mouth blisters at the time, but usually when we spray the milk from outside her mouth she'll still swallow.  This time I could get it in past the blisters on her tongue and gums but what ever was going on in her throat was having none of it.

It's painful to read stories for operations on DEB kids to take away the built up scar tissue there...  Let's keep that from Renata still...

Can you tell, we eagerly await the addition of solid food?
One of my buddies used to make light of a Simply Red song directed to others of older generations stuck in the 70's 60's etc.  The glory years.  It's just a quiet under the breath "Jee, Holding Back the Years".  Usually I get a little giggle.  It's not so funny right now as it's not even years I'm looking to hold back.  It's the months, weeks, days for us.  When I think of him now, most of us boys from 20yrs of friendships are well into family lives kids etc., hahaha he's still a swinger playing vinyl in clubs to all hours.  I'm not so sure he'll play a Simply Red song anytime soon, but his snide humourous comment seems reflected now.

In any case, our conversations brought us to stay ahead of pain with medication.
We usually see when dressing changes are going to be difficult before hand.  As she tends to have fussy outbreaks that progressively get worse.  She's been a wonderful kid in the disgruntled child department so when she's not happy it's not because she just plane hates the world.  There was only a month or so of the evening colic I've heard about from others.
Now she just arches he back and cries a bit then you'll know she's moments off from sleep.  Anything else at different times will usually give a signal that something is up.  We usually find out eventually, but sometimes because of a Monday, Wednesday, Friday dressing change regime what's hidden usually stays hidden and she and we live through it.

The great part, (if there can possibly be a positive to EB) is if a blister does make itself seen, is how quickly she settles after lancing it.

I wonder if it's like removing a big ugly sliver from the tip of your finger?

The next part of our visit was to design new boots with the OT department.

They look like moon boots or those surfer boots that went urban hipster a few years back.
I'm hoping they work with some minor modifications.
So far I've only put one on.
I'll deal with the unwrap of the other foot tomorrow.

Renata already forgot to put it on after a diaper change.  I caught Raquel at the beginning of a kicking motion.  I'm not very confident she didn't do some more damage before I isolated her foot.  She's been sleeping well for a few hours now, so maybe we dodged a bullet and tomorrows change will only be about monitoring her healing feet.

Cordelia, Raquel and I were playing shoot the rabbit in our living room last night.  Cordelia was the rabbit, with Raquel on my lap I'd hold her arms and pretend to shoot Cordelia as she ran back and forth in front of us.  Cordelia would pause and we couldn't shoot or we'd be out.  So she'd be standing in some very funny positions with contorted facial expressions, Raquel was giggling something fierce the whole time.  She absolutely loves her big sister and being in the middle of the action, that is clear.

Sunday, December 12, 2010

Simona - Summerized by either 'Queen Bee' 'Worker Bee' or 'Bee in the Bonnet'

I've mentioned Simona before in this blog. 

Simona was the one who offered her basement to us in the first hours of going to the Children's Hospital.
The proximity was a short walk with free parking.  Renata and I in fact started our live-in relationship there as tenants.  As well, a long drawn out story I tell only when I have a captured audience.

Simona was the one who offered to help Renata out of a tear filled call to her parents. Where more blubbery sobs then actual coherent sentences would have been the case.  It was necessary and helpful that Simona too has Czech as a first language, as it wasn't going to be a call I was able to make on Renata's behalf.  I'm OK with the many colourful and practicle words heard in a Czech Tavern, that's about it.

Simona was the one who while Renata and I were headless chickens and loosing our marbles in the first days, brought in full bag of toys and devices for Raquel's mental development.  A few were promptly attached to the incubator for her viewing and listening pleasure.  The fact was, Renata nor I were even sure Raquel would be there for the rest of the year let alone need those early building blocks for her development well on into life.
Once we were able to digest what Simona was doing and see past the new sores and obvious pain, it made a world of difference in us understanding Raquel as a normal baby, but with skin issues.  It also helped getting past dark thoughts, to imagining Raquel living a long and enriched life.  A reality it took a little time to expect.
After Renata and I had spent long days in the hospital and needed to go home to be with Cordelia and recharge, Simona would take the evening.  We also had Louisa in that department too.  The two of them would go in on alternating shifts and read or talk to Raquel, hold her and be a loving family presence for her, for us, as another needy girl was at home.  I can't think of too many nights she was without someone deep into the night.

I have to watch how much I praise Simona due to the connection of the 'bee in the bonnet' part.

Simona was asked to accompany us for a few of the early Doctor appointments, and ask the hard questions we were either to stunned to think of or scared to ask.  Sometimes her questions would go a little off topic.  But giving a valuable pause in the action to think of how to frame questions and contemplate vague answers.  The best part was watching the doctors or other professionals squirm by her rapid fire questions and knowledge of the system.

Ask for a pitbull and receive a pitbull.

Simona set up a dinner run of neighbours so we'd be nourished during this time, the many bottles of wine that accompanied the food was very much appreciated and kept the evenings soft and nights deep in sleep.

Once the time had come to go home from the Hospital, Simona was here too.

She did a few night shifts as Renata and I slept.  In the time Raquel dozed she'd pick a cleaning project, our house was cleaned from ceiling to baseboard.  Our oven, our fridge, our bathroom, our hood vent, Cordelia's room and everyone of her toys.  I made sure to suggest a few places of off limits.  She hears what she wants.

I look over my shoulder now and realize Simona hasn't been here in a while.  hmmm.

We had many disagreements over placement of this or that.  Certain lighting situations were to be fixed.  Beds to be moved, furniture to be bought, all was in question and much had to be argued for or firmly stated with a NO. Still if she really wanted to do it, it was done, regardless.

We had bleach in our house for the first time due to Raquel's baths.  Simona was still able to up the anti and brought in a whole whack of new products we only see in commercials.  We actually don't bother walking down those isles in the store.

After a while I or we couldn't help but put a foot down.  We suggested that if she must, please get some of the more natural products.  And yes we know they clean like SH^*
The toys, beds, rockers or 'learning tools' became a problem as plastic toys and other CR#P have always made my skin crawl.
In one case I came home from work to find new giant machine in the middle of our living room.  I still can't figure out how Renata didn't nix it from the start.

I was assured the battery filled rocker would go when we'd have no more use for it.  I thought we'd have none, but in a moment late, when morning was a more appropriate term, Raquel squirming, crying and in total discomfort the big blue swing was taken into service.  At first I'd push the bottom with my foot or hand thinking I'd get away with not using the batteries.  After inertia settled and the chair moved no longer, Raquel would act up again.  I did that for a few nights, till sleep deprivation reared it's lazy head.

It was easy, push button, twist dial to add sound and movement to the spinning mobile and daze off with Raquel to the click, knock rhythm of this now wonderful chair of neglect.  In the following weeks I'd get fits every time I turned it on imagining the inevitable; sending those ten or so sized D batteries to a landfill.  Later leaching into the rivers I like to go pester fish in. 

But really, there are still many things here that are useful that we use every day, 80% brought by Simona.  In fact sometimes I feel for her husband when a new object arrives, as he now works for Raquel. 

Cordelia also was not forgotten in this either.
For every object Raquel received, Cordelia would have an equal.

So for every uncomfortable moment when I feel like a nail is being scratched down a chalk board placed in the middle of my spine there are three other moments of complete gratitude.

Thank you, Simona.

and a very happy names day!!!