Monday, January 31, 2011

Sweating the little and big of it.

I'm a little lost in what to get bent out of shape with respect to Raquel's blisters.
The more research I do, I realize us stressing out over ever blister, is maybe obsessive.  Kind of like the new parent and the bowel movements of their baby. 
hmm, I guess we're still pretty interested when that happens and how regular Raquel is too.  Adding medication and GI tract blisters makes it all that much more important for Raquel.
Never mind...

The blisters come and they always have a direct point in time when and how they were created.  Some we don't have an answer for and we spend a lot of time second guessing what we've done.  If it remains a mystery I've adopted a useful saying
'Dammit Janet'. 
Somehow it makes all the difference.

There was a small fluid filled map of Italy down the center of her spine that has finally become less worrying.  Saturday evening it smelled and was very raw after two days or three days since it first appeared.  Now there is just one small spot that remains raw.  We originally left it to air under the silks as we do with all the other ones, but this was bigger then the rest and it was directly in the center of her back so it really didn't have a chance to heal.  As well some of the new scab grew into the weave of the silk, so getting it off was somewhat a challenge.  A little salt water and it was fine.
So I cut a circle of mepilex and put it around the wound then put a second piece over top.  We did that for two days and now it's fine to be free under the silks and breath and healing well each time we look.

But then Renata noticed her foot smelled a bit Sunday night.  Today during the change it was a little worrying as it smelled like a brewery.  Very strong and yeasty, the dressing garbage bucket sits just below the overhang of the counter and the smell stuck in my nose for an hour afterward.
I have to add that it's wonderful having the nurses around to explain why that might be and what steps I could do then to help.  I couldn't find any of the ointments we have for her at the time of the dressing change, as I had buried them deep and behind some other supplies so we cleaned the area the best I could.  She's had sweet smelling gunk on her feet before, but never a smell like today.  It's going to make the prospects of a full day of work tomorrow impossible as a doctor visit or long call will be in order.

Too bad we can't trust any doctor to bandage her up properly after an inspection has been made.

I had a problem writing of late, as some fairly heavy facts and thoughts have run their course through my mind.
The most difficult to digest was a fact Renata came up with the other day.  The oldest living woman with Raquel's disease is only 50.  I've read in many cases the average being in the 20's, but I'm a firm believer in that she has had an incredible start with her care and that's surely 1/2 the battle.  The other half is her will, spirit and the will and spirit of her parents and family.  That she also has in spades. So envisioning her well past her 20's is quite easy, but I was unprepared to hear 50 was the oldest of anyone on the planet, and this person has been battling the resultant cancers for years!

I couldn't help to become introverted with my thoughts.  The tendency for me is to be dark when I question or mull through issues I'm trying to understand, but this blog is read by a public many of whom I don't know.  Considering I have a shock effect for friends who know me, I find I really have to watch it here.

If you start in pitch black, then it must be light at the other end?  Just hope you can get there, I guess.

This was a few moments of bliss for me the other day.
I had both daughters sleeping on me, then had a few moments of Raquel checking for lice and bugs in Cordelia's hair.

Saturday, January 22, 2011

All was well.

This morning had some sunshine, which we've seen very little of in Vancouver for some time.  Renata went off for a run and I took the girls down to Moja Coffee for an espresso et une croissant almond, Cordelia choose the pain au chocolate.  We played little running games as we walked the three kms to Andrew's Cafe.  Raquel is getting more and more aware of her goofy sisters antics giggling and watching her every move.  Half way down I noticed Raquel had the large zipper handle in her mouth.  I was quick to pull it out and fold her one piece suit to hide it and the one on the other side.  The rest of our morning went along well.
Now we are into middle afternoon 6 hours from her sucking on metal and we've just finished another one of our too famous Renata sitting on chair, me on floor with head light peering into her screaming mouth stabbing giant blood blisters across the breadth of her tongue.
She's now absolutely beside herself in pain and crying fits.  Her eyes and face is disheveled and stressed.
Hockey is on, I'm sure by the time the Canucks' game starts in another three hours she'll do as usual, lay on my lap and sleep right through.
Renata is a star.  She's better equipped every time this happens.  While I was out doing a little work she did two attempts at popping them, but when Raquel is on her back these blisters are very very difficult to pop as they lay flat and there is no room for error.  Brave.

Tuesday, January 18, 2011

Second Holiday for Raquel and Family

We've had a pretty good stretch.
Nearly everything has been going well since the falling crushing chair incident.
This was very good as we were headed off to Sun Peaks for a little ski holiday.
It's a 5 hr drive from Vancouver to just north east of Kamloops.  Timing on a holiday for Raquel's total health was great, not at all good timing on the weather front.  Good if you are already in the resort, not for the drive.  Nearly +30cm of snow had been dumped everywhere north and east of Vancouver, which is basically the rest of the province.
As we drove further east up the Frazer Valley the heavy rain and low temperature was worrying.  With my new iphone ichecked the two possible routes to Kamloops.
Highway #1 had 75% packed snow.
Highway #5 was rated at 100% packed snow.  The #1 is longer by 45 minutes on a good day, so with children in back I figured continuing up the valley instead of mountain passes was the safe bet.  If we're to be stuck in a snow bank at least it'll be closer to civilization as many towns dotted the canyon.
SMRT. (Homer used this term in the way best suited to my decision, but the Czechs have another more ominous meaning that kept the fear and my knuckles white)
For much of the drive we plugged along at 60kms an hour.  The Wentzels whom were also on this trip went over the top and though two passes.
Andrew has had many years driving up to Whistler from teen hood till now in countless storms.  Some were such that no-one was able to get through, ahhem except him.  So another random storm was of little significance to him at all.
This one and all others scare the Cra& out of me..
Funny as we encountered 75% compact snow, the Wentzels encountered 100% clear albeit wet roads all the way to within 20 kms of the ski resort.
Just as we finished a diaper change in Lyton the Wentzels were just driving into Kamloops.
They were so far ahead that they were able to buy groceries for 9, clean up the kids get them some fresh air and enjoy a rather civilized dinner.
Renata didn't exactly complain about my choice in roads.  As I did my best to comment on how beautiful the desert was with snow, distracting the situation.  Although me looking at scenery was probably more stressful for her then would I have kept my eyes on the road.
Cordelia did complain and made up for Renata's tolerance.  How much further dad?  Can we have dinner too.  Why is Kai having dinner now?  (Renata did all texting)
It was very helpful when Cordelia finally fell asleep.  Raquel was out since our quick stop in Lyton for the diaper change from just past Hells Gate.

Just as I planned, really. The timing of course.  Why drag Raquel through a grocery store buying food and adult drinks and then sit in a warm diner while she could be driving through near white out conditions and having her diaper changed in dark grungy gas stations forgotten by time, super highways and the invention of central heating.  It was laughable.
The diaper change.
We pulled off the road and past two snow banks higher then our car into a little ESSO. Out comes Raquel's practical little red travel kit and the change bed. 

Way in the back hall past the gas stations nutrition section along side the one wash room that was in service we stacked six boxes of -40 window cleaner fluid, laid her on top and shuttled warm cloths back and forth from the sink. Wonderful and insightful graffiti scribbled on every inch of the 50 years of grunge.
Taking pictures in these instances hardly registers as it becomes more of a war maneuver, get in get out.
After a few minutes a tired line of people waiting to be next grew. Did I mention the coldness?
Raquel had unfortunately pooped over all two layers and it was a few moments in the elements for our little pooper trooper who already had a good cough going.

The cabin was uneventful as our days were pretty good.  Meaning it was near blissful less the odd moment of cabin fever made worse by the boys playing at a much different scale then the women.
We (the boys Andrew, Kai and I and one girl Cordelia) were certainly fulfilled with some good skiing.
Fortunately the ladies were able to go out skate skiing and Renata was able to do some skiing on her own.  She took off for a few hours and ran over as much corduroy as she could find.  She missed the decent powder as it warmed considerably by the day she was finally able to go out.  Still, she's a Euro and doesn't have that great appreciation for the softness of it anyway. 
Cordelia really has it rough.  She has the unfortunate lifelong task to make up for all the times I'll feel the need to rough house with Raquel.  This skiing trip was typical of how she has too keep up.  I won't tell exactly how she ended up like this.  Just that it was 100% my fault.
Its a good story so maybe I will. She was holding on to my pole so I could shuttle her safely (?) through the trees to the groomed run on the other side.  Suddenly a drop off appears over a fallen log.
When her and I are skiing we have this routine where when we hit the flats and she loses speed I come up from behind and put the end of my pole in her mid chest, she grabs hold of the basket and as I go past I give her a pull and sling shot her out ahead of me. (Roller Derby style) We've done this countless times,  In fact I now see how hard and fast I can get her to go.  She never disappoints and never wipes out.  Back to the drop off.  As I jumped over it slowly I figured it was in her best interest that I pull hard so that she doesn't do a face plant as she gets to the edge and slowly teeters off.
With a big pull she leaned back and went for it,  she had good air and forward momentum, except her one binding released on landing and continued to drive herself into the snow.
She was still lifeless when I asked her not to move.
She called out.  "Are you going to take a picture?"
Yes of course.  That was a wicked crash.
Then the concerned father comes through.  Are you OK?

Inside, I can assure everyone she was laughing.....

The dressing change up at the cabin was OK.
Difficult as we tried a new upright procedure then the typical lay down.  Raquel fussed a bit and I did a terrible job.  Lately I've been at my irritable best during changes.  Poor Renata.  I try, but it's been wearing on me lately.
Raquel chucked off a hand dressing the next morning on our way out, then again in the Restaurant in Kamloops on the way home.  Her left hand is getting worse and worse toward a claw from all the bandaging.  Not so much her right (?)  I'm really at a loss as some times I think the splints are working, then I stop for a while by doing other things that require less foam, bulk and weight.

I at first thought we could do it at the table.
Then realized it was probably not going to work over blueberries and pancakes.  So off to the washroom.  What a facility, there was the wonderful pull down bed.  Right beside the sink and it came out perpendicular to the wall so we could each stand on a side.  I'd have been terrible for certain if Renata had to stand at my side then.  Tangled arms and claustrophobic.  The woman's wash room was wonderful, no need to line up boxes of tomatoes in a cold dank dark corner with a flickering florescent.
The procedure was quick and somewhat easy.  Except the finishing touches had to be done on the table adjacent.
(no children were hurt in the contents of this blog)

Thursday, January 6, 2011

Barely averted a massive -------

Exciting blister.
Cordelia decided to go under my feet while I was walking with Raquel in my arm across our living room to show my father and Renata something on the computer.  As my feet could no longer shuffle under my body I started to fall.  At first I feared for Cordelia as my weight could have crushed her. then as I lost all balance and nearing the Christmas tree and table and chairs and floor it was Raquel.  Luckily there was an Ikrappa chair that I was able to use to break my fall by leaning my leg and hip into.  The chair did it's part and folded into a typical Ikea junk pile, Cordelia was missed for the most part, a bruise four times the size of above is on my leg and Raquel ended up with that after two days of growth.  If she were my beer I'd only have lost a drop and the floor long since dry.  We've been pushing out liquid for days.  The crash was followed by all four of us crying in our own manner.  The old man just got up and left our domicile for the peace of anywhere else.  I'd been putting Mepilex on and around the wound and it hasn't helped at all.  I'll go back to just the plain silks to see what happens.  Doing nothing has worked on all the smaller ones that pop up here and there around her torso.  This is her largest blister on her back to date. We'll see how it heals by tomorrow.  I predict it the skin lays flat and it will not again create one of the dreaded fluid pouches.

We had a very fussy change today.  I wasn't into it from the start either and said so (even when I know, I should keep those things to myself).  The grump only got worse as Raquel kicked and made irritated cries for us to leave her alone.  The tight rolls of bandage unraveling to the floor.  ARGGG!!!  We've had so many good changes of late that when things start to go sideways I'm having less patience for the procedure.  (Maybe I should let someone else do a change for a change?  Anyone? Bueller, Bueller, Bueller?).  There was nothing of any size she hasn't dealt with before, so I think it was just a grumpy evening by all, less Singne.  At the end of the change, because we still had Singne (one of our fabulous nurses) for a couple more hours, I made myself scarce.  Renata was starting to voice her displeasure at me for this and that, nothing undeserved unfortunately.  Best not mope around and make matters worse.  These are the moments I'm thankful Pani Hoza can't get me with one of his Judo moves, Kind of difficult from across the Atlantic and two continents.  I'll sleep well tonight.
The short absence worked, when I finally came back everyone was calm and our married life continues.
Our two safely out from under feet.