Tuesday, December 27, 2011

Holiday cheer walking the ER foyer

This is Raquel walking about with an open hole in her abdomen waiting to be admitted to Childrens.
I didn't say earlier, but that was a very very quick visit.  Considering the sign suggested a 3.5-4 hour wait.  We were in and out within an hour.  The nurses after a couple attempts got the Mikey back in.
The area is a little bloody and raw, but not that big of a deal.

Although she did develop a giant blister in the middle of her chest.
It's the first one she's had on her chest since the first few days in NICU. 
It's crazy.  Ren comes home and she goes from nearly zero open wounds to 8 or 9 with a few quite large and uncomfortable looking.
I also don't think she's slept through the night either since she's been home.

Monday, December 26, 2011

Merry Christmas

It's been a busy week of sorts.
Ren is back and the family is whole again.  Seems with Ren around I revert to slacker dad very quickly.
Not that I wasn't slacker dad while she was away, but it's funny how certain things become a chore when they weren't, ummm - less than a week ago.
Less than a week?!!!
Christmas Eve went very well.  Cordelia was so anxious that she went to bed early to be sure Santa will come.  Many evenings it's difficult to get her to bed and stay in bed, but the beginning of last night was as simple as can be.  Raquel also went down easily and Ren and I had a nice finish to the evening watching Zombie movies.
It wasn't till about 1:30 am when a little voice starts up at the side of our bed.  I wasn't quite sure what was being said only that Santa's name was used frequently.
Oh back up a bit.
The milk and cookies.
Typical to the fun I have with Cordelia I was trying to talk her into giving me a couple of Santa's cookies as she was placing them on the (still under construction) fireplace mantel.  I explained Santa's fat and likely doesn't need them all.  Furthermore he gets more than he needs from all the houses he has to visit.  I tried to use some rational sense of how a 250 lb man dressed in a polyester suit is going to have some difficulty to squeeze down our chimney and out the glass window from our gas fireplace?
Of course my reasoning was flawed and worse I used a very bad word to describe Santa.  Cordelia then proceeded to write him a not telling him exactly what I called him and that I should receive 'coal' then taped it to the wall inches from the milk and cookies.

Anyway, 1:30 talking in a stern voice I do my best to urge her back to her own bed and sleep.
Her reply nearly had me in a fit of laughter ruining any possibility of sleep.
'But I don't want to go back to sleep, it's boring'.
I just can't argue with that.  Sure it's boring, staring at the backs of your eyelids for hours and hours on end if random thoughts of presents don't let the subconscious take over.
After she settled in our bed, the heat and lack of room sent me off to her bed for the remainder of the night.  Except within moments of finally drifting off, Raquel pipes up.
Then the waiting game with Ren and I.
I wait for the sound of pain/anger in her cries then typically I'm up in a flash, but last night it wasn't there.
Renata still having slight jet lag wasn't able to wait out the whimpers and carried her off to the living room.
Finally at 7, I walked down the hall to see Raquel in party mode and Renata laying on the couch watching her with a blank stare of tiredness.  Cordelia obviously woke to my voice and was quickly joining the Christmas fest in the living room.
Hmmm over tired wife and child for Christmas day..

In the end I may have won the argument as Santa wrote back on the bottom of Cordelia's note that he was indeed a little overweight and a few less cookies Christmas Eve might do him good.  He said he'd take the extra cookies and feed them to Rudolf to keep his nose so bright.
Funny, Santa having a similar opinion to me.  Rudolf didn't end up eating the cookies anyway.  Who knew, Reindeer don't like chocolate.
Although maybe Cordelia won in the end as Santa left me two lumps of coal.

Well, we survived, fantasies intact and a happy family.

I have to admit I'm not sure for how much longer.
Raquel has developed a very hot temper with a flash fuse.
Deny her anything, count to two and witness the apocalypse.  'Fire and brimstone baby'.
It's great that she has the will to fight, it's probably what's going to keep her going through all the pain and suffering she has in future years. 
BUT, Raquel gets constant catering and these recent outbursts show she's well on her way to SPS (Super Princess Syndrome). 

Raquel is full bore walking now.
She's not too wobbly.  Her knees are some kind of disaster though as it only takes one fall walking across the carpet and watch her knees hit the ground and her momentum push through putting an incredible amount of friction on her knee and palm areas.
Her knees are currently thick calloused skin marked with big scabs floating on a layer of water and blood.  It's very hard to lance with the needles to relieve as I'm not sure what skin is intact or not. Kind of like her big toe on Friday.
It's been a long while since I've met a blister that made me uneasy queasy.
It wasn't even that big, it's just so bizarre to try and pop a blister covering her big toe like a thimble.  The first couple attempts to lance, the hardness of the skin wouldn't let the needle penetrate and the partially transparent skin moved independently of her toe within the bulging fluid filled sack.
Hasn't fazed her.

Oh, haha
How could I forget. while Ren was feeding her yesterday she picked her up from her stroller and pulled out her G-tube.  It was a spray of guts and goo all over our mudroom (where Raquel naps in the day).
Well, no not really.

Just as I was walking to my car to finish up my final pour of our fireplace panels I get a paniced 'Ryan, you have to come here now'.
There in Renata's had is her G-tube 'mikey', I rush around the corner and Raquel is awake and peaceful in her stroller freshly awake from a long nap.
Renata looking very worried while holding the plastic attachment with a half inflated balloon meant to keep the feeder in place and attached to her body.  Creepy to see the balloon and imagine it had to either make like a mouse and squeeze through her hole to the stomach and or the skin stretched to let it out.
For those who have G-tubes, this type of thing happens often enough and shouldn't be that much of a deal to push it back in.
Theoretically, I get it.
I've been present for some tests of the balloon to see if it's properly inflated but pulling it out, hasn't happened.
We get to the couch where Renata can hold her in a semi flat position while I tried to basically stab her with a soft plastic instrument in the area she's supposed to have a hole.  The end feebly folded and deflected as if I was trying to insert it in to the belly button of an adult.
I made a couple phone calls and finally got the young man with EB and a G-tube near us to give advice.  He basically said try the catheter that we should have in our supply kit.
WOW did I feel useless as I pulled this nearly three foot long plastic tube out of it's wrap.  Putting it up next to the 3 inch Mikey I started to realize I'm not the person for this.   As well I was told that within an hour these holes can seal up and then it could be another three day hospital visit.
At Christmas no less.
The thing about the catheter is that it has a solid tip.  Back to the couch and one attempt at sticking the overly long tube into Raquel's stoma, if it  hadn't sealed up already.
I was able to push it in just over an inch before it met with resistance.
In thinking of what her anatomy looks like (enter Damian Hurst exhibition I saw in Paris) it should have more room to take the tube than that.
We then bolted to Childrens ER, doing our best to avoid a proper hospital stay over Christmas.

Images of when the Doctor who performed the original surgery explained how difficult of a time he had finding the stomach behind two organs made my decision right or wrong to have a professional do it that much more easy.
Raquel was giggling and playing the hole way over and walking about the waiting room with zero concern.  Ren and I not so much.

Wednesday, December 14, 2011

Another Step Beyond

Each day now I'm more and more impressed with Raquel.
Nearly everything she's doing is blowing me away.
It was probably only three or so weeks ago I thought she'd not walk till she was two and even then it'd be on shaky ground.

I've never quite been happy with the wraps and always looked to improve, when an idea or time presented it's self.  I was able to glean from Casey's mom & dad on my visit to NY a partial technique with the Mepitel.  I don't use it directly on her feet like they do Casey, but after the Visco Paste compression bandaging use to assure myself her webbing stay in place I put a couple cuts of mepilex onto the her sole and top of foot.  Much the same as I used the thicker foam of months gone by.
It seems to work very well.  Where I used to use nearly two full rolls of Visco Paste in a dressing, I've cut it down to a half roll.  Except now I use a full sheet of Mepitel.  It was started so that she get a better contact to the ground than she did before.

Not too soon either as yesterday, Raquel started to walk more then crawl.
She'd get half way across a room then stand.  As if to realize she can get to point B much quicker with a better view if I walk.

The evenings and nights of late have been exceptional.
5 out of the last 6 have been quiet.  Last night was so great that Cordelia I and were able to cook French Toast, prep Cord's lunch and prime Raquel's feed before she woke.  Then we all sat around the table being goofy while eating together.

Raquel has developed the deep desire to feed everyone.  It's probably because she's totally out of this typical mode of eating and watches with envy everyone else do it.  If you don't give her a fork or spoon within seconds of her getting to the table there is a lot of noise, discontent and waving arms.  We are given no choice but to oblige her and patiently eat the tiny morsels she presents.
My word, if you miss a tiny piece of food on the utensil.  She refuses to give up and keeps reaching for your mouth for you to finish it.
'Waste not want not '.
In these occasions, does she ever need to learn how to talk.  The uuuhhhing gets to be much once and a while when you look at the empty spoon and haven't a clue why she's trying to jab you with it.  It's not till she actually gets close enough to poking out your eye that you can see there is a crumb stuck to the bottom. 

Maybe its not a good idea to have her speak her mind.
Deep within the force runs strong in this one, fear I.
Once she starts talking she'll never ever stop, I'm quite sure of it.

To top off this morning, I had so much extra time we all went for espresso before taking Cordelia to school.

It's been pretty fun watching Raquel and Cordelia interact while I clean or do what ever house chore I usually avoid when Renata is here.  They carry on amazingly.  It's also starting to be clear Raquel is going to be the one that starts and instigates the famous sibling rivalry.

Then the last but certainly not least we've weened her of her daily dose.  She is now no longer the addict in the household.  We did this once before and it lasted a couple days.  I don't see any reason for this not to continue.  She has the ability to communicate now and she'll be forced to be better at it.

Shhhh don't tell Ren how good it's been over the last week.

Tuesday, December 13, 2011

Holding Steady

The new wraps are working, the only problem with using the silks underneath the conforming bandage is that they slump some during the two days between dressings.
Raquel had one big blister on her shin, lower than she's had one before.

I can't pin it on the bandages slipping just yet.  Mostly because changing a soiled diaper of late can be absolute chaos.  Once her two layers of pants are off she really starts to kick and roll.  The only area you can hang on to is her legs with the bandages.  
Who knows if one of our hands slipped off and pushed at her leg?
Worse is she's got a new blister way to close to her pooper.  Every time I've tried to clean it and put on some zinc paste she twists that much more wildly.

Last night I waited till she fell asleep as I didn't have a second to help should things get out of control.
Once she was naked she woke and started to freak out.  She then rolled over and attempted to crawl away.
I grabbed her in all the areas you DON'T grab a baby with EB and hoped I'd not done too much damage.
I suffered thoughts of giant blisters forming at her shins, under her arms across her chest or where ever as I tossed about uncomfortably in the morning before my pretties typically wake...
My ears were on high alert for every subtle sound she'd make.
Of course other then the one blister across her shin there was nothing to tell from our late night skirmish.

Ren's likely staying in Vienna or Salzburg tonight.  Very envious.
She should be meeting with a Dr. from the EB clinic of Austria.
Then she's off to her uncles, I think (who lives at the base of one of Austria's most famous mountains and near likely the most famous downhill races in the world).
I can't think if there is a women's circuit on that hill.  So I'm not sure my daydreams of watching Cordelia carving hard turns and dropping several hundred feet in a few seconds has much validity....

It's been very good since Ren left.  Maybe too good.  Raquel has only had two nights where she's gotten up and pushed my nerves to crackling. 
I'm wondering when the Yang is about to cycle back through this little house hold.

Oh right, it did.
Nothing to do with EB.
Just Simona and my battle of wills.
Some how I've learned over the years to get under peoples skin when verbalizing discontent, especially in a written format.
Haha I even got fired for it once...
In this case, like many others I mind as well have poured scalding oil on her, as to her reaction.
She's given me a few ultimatums in our time together (when Ren and I were her tenants).
Number One - 'No cooking salmon fish cakes before noon or likely ever'.  I had the not so great idea to have a what I thought was a wonderful 10am brunch.  Something out side of the norm.  Problem was, it permeated her house all the way up three floors.  The reaction was like I'd pumped nerve gas into her space.  Gasping and warning that next time I'd be living somewhere else, wife/dog and all.
Number Two - 'No dog in the flower beds' or was it 'No playing in the boulevard in front of her bed room window at, before or near 9 am - Burny, the best dog a man could ever wish for, was rather playful and like her master knew how to tear shit up.
Hmm maybe that was three.

I'd given Simona One, but maybe I'd not made myself clear enough and or let it slide of late.  Maybe I should have made a 'plasticized' stick-it memo and pasted it to our front window.
'No plastic crap', but if it was plastic I can only think of this analogy.
Pulp Fiction 'Filthy Animals'

Yet I was filing so many odds and ends till the Pièce de résistance.
I won't bore the readers with that detail, lets just say I lost my marbles.
Zero to one Hundred in a millisecond.
With perspective it was a combination of my Mom, Renata, Simona and our infant development nurse.  It's not that most of these things aren't in fact very useful or that I don't see Raquel developing at an amazing rate.   But.....

Good thing Simona and I, other then having our temper, hardheadedness & many other things in common, we can take a hit, step back, see the whole picture and keep on ticking.

After the clean, Cordelia and I worked on a Matisse landscape titled Montalban.

Hopefully we can get back to it before long and tighten up some detail.  It's a team effort, but man was Cordelia ever proud when we had put all the paints away.
To top off the day, Louisa came over to watch Raquel for a couple hours.  Louisa was one of our night owls that watched Raquel while in the  NICU.  She was nervous at first, but in the three hours I think she was spent.  Raquel has a crazy amount of energy these days and does not stop.
Anyway, Cord and I trudged back up the mountain for a hike and ski.
Oh and the girls decorated the Christmas tree.

Baby crying.

Blood & saliva with some choking.
Good thing she's so strong right now to watch her push all that guk out. 
10 minutes of suffering, now a little 'beg, steal or borrow' and she's out.

Umm maybe this out burst lasted just a little more, no need to stress Mom a third of a planet away.

Makes sense, she's been owwwing all day as the dressing change showed nothing.

Now what to do?  leave baby on my chest or send her to bed so I can get some shut eye in case..  Or watch her.

Friday, December 9, 2011

New techniques in dressing her hands and feet.

Up till now I've been using the visco paste up her arm to hold the necessary compression bandages in place.  It finally occurred to me that it was extra bulk and dressing layer I likely didn't need any more.
If I don't use the conform up her arm or leg she'll just shake the bandaging off in minutes with all her activity.  In some cases the wraps act as a protective layer, as whitnessed by other kids and adults with EB.  So what I did was put cuttings from the silks supplied by Derma Silk from the edge of her visco paste compression area around foot and hand then the conform had a place to wrap up her arms and legs.  At the top the Silks we're let to stick out the top like I'd done with the visco paste. 
At any rate it was a big step for me in the wrap department to stop using so much throw away material.
The nurse and I did both arms in the morning.  By evening we checked one arm and all was perfect so I applied it to both legs.
I imagine she'll get way more air to the area and the zinc in the bandaging won't soften her skin any more.  A side effect of too much topical zinc I'm told.

It's been purculating in my head for months and months since Dino from Derma Silks suggested I use the material in the bandages.  It wasn't till he showed me some images of WILD looking sores with the material directly at the wound.  Two months later I finally came to this.
It's simple.
Not sure why it took me so long.
We'll see how the week goes.
If well, I'll be saving three rolls of visco paste a week.  The silk under layer will likely last a half a year with probably a similar cost per size to a roll of visco paste.

I bet she'll be more comfortable too.

Cordelia is my new Rock Star.
We did another night ski.  Hiked up Mount Seymour in the full moon light off at the alpine trail.
We passed quite a few hikers and a couple skiers and everyone was jealous of Cordelia's free ride.
It wasn't that free.
I'm not sure many people have water skied behind a boat for an hour, up hill, past switch backs and holes in the snow that go to China should you fall in. 
I had to pinky swear that she wouldn't actually fall to China.
But from 10' ahead of her up hill she couldn't actually reach my pinky.

Probably another reason I shouldn't be a father.  Scare my children into paying attention.  Like the Dragons in the hall.  Keep her in bed at night.  That was a complicated story.  There were three.  One bad, one good and one the sister.  All based on Pete's Dragon.

Anyway, here's Cordelia and my excellent Friday evening adventure.

Our ten second time exposure images.

notice shadow from full moon on snow from trees

Raquel was a champ too.
Totally engaged.  Ripping around, happy and healthy.  Umm at home with Babi.
Except all that snot.
Lots of snot this morning.
Cleared up some by afternoon.

Simona is here tomorrow.

Thursday, December 8, 2011

Ren gone, but we're fine

It does help that we've lined up all of the monthly nursing hours for these two weeks.
Still it's very hard to get in more then 5 hours of work.  I don't think that's got sustainability written anywhere on it.
But we're swimming very smoothly.  Shh don't tell Renata, but I was able to feed, dress, prepare lunch, do some french lessons for Cordelia, brush teeth, gather them both up and take Cordelia to school in the morning.
Oh yeah, and we had a stop for coffee on the way.  hmmmm
I'm not sure that's happened to date.
I do admit I had some help in the morning on way out.
Had my mom here.  It was a three person job doing the diaper.
Worse then any dressing change I can remember.
I don't get it.  There is nothing painful about doing a diaper, yet she turns, screams and kicks violently.
The head end person has to talk to her in attempts to calm, while pinning her arms and one knee.  While the other contains the cleans all the poop from getting on dressings and in open wounds at the knees etc...
Then later in day she's sit quietly and it's over in moments.
What a pain in the >>>my little child can be.

Anyway, time to prepare for the kids before they wake.
Or sleep another half hour?

Three hours later..
Slept just a little longer than expected.
Cordelia was poking me in the back of the head complaining that I should get up.
Raquel still sleeping.
After 20 minutes of that I dragged myself out and in very efficient manner accomplished in time everything I needed to do.
Kid at school.
Raquel with Simona.
Me at work.

Taking off her own coat. Wondering what Simona has in store.

Saturday, December 3, 2011


Last night Ren and I had Simona over to take care of our kids while we had one last night out before Ren disappears for her Euro trip back to family.
Just a regular night, as far as Raquel and Cordelia were concerned.

We'd been at our friends house for maybe 30 minutes when I hear my text bell dinging from across the room.  It took a while to go over and check it out and when I finally did, I see Simona had sent something.  I got a little nervous that we might have to cut the evening short.
My mind was numb as I read the first few words, 'Raquel is walking'.
It was total disbelief.
I leaned over and showed Ren the phone with those three words and the smug comment only Simona can make following it.
Simona gets the first walk?
My only response, was what it could be.
What Ever
I quickly slipped into denial mode that such a happening could take place with out Ren and I.
It's that moronic saying about if a tree falls in the forest and no-one is around to hear it, does it make a sound.  Simona was maybe the squirrel who went down with the tree.
Except at 6 am Cordelia jumped on our bed and proclaimed that Raquel is walking.
I mean really!!!! 
Apparently the whole squirrel family went down with the tree and lived to tell.

I was on the edge of thinking she'd not walk for another year or maybe less, but certainly not this week or month let alone night.

As well her foot just healed from one of the more painful, massive blisters I've seen on her in a long time.  Walking just wasn't on my radar.

I can certainly tell you, when a kid falls in a living room, everyone hears it.

Poor Cordelia, I must have told her 20 times to not get to close to Raquel while she was walking, yet she didn't hear my words once.  I'd try to get Cordelia to be a bit more calm, not grab Raqu, and especially not to help her etc.
Ohh well.
Yes that resulted in a blister on her forehead, yes I'd prefer it didn't happen, but it was way way too pleasurable to pretend to myself this was her first walking session and not be too strict in how Cordelia and her interacted in this momentous occasion.  Totally worth the blister.  I probably could have been easier on Cordelko, but that's the grumpy bear syndrome I've inherited.
I guess Simona deserves it.
She's certainly put in the time.
My only problem is her competitive nature, which will likely never let us revise history to to be more liberal with the timing of this event and participants.

Friday, December 2, 2011

Cordelia and our night ski

I have to temper my enthusiasm.
After the ski Cordelia said to me.
'Don't tell mommy, but take me fishing while she's away in Czech'.
She smiles in eager anticipation, but then it brings me to why she likely isn't interested in fishing in the first place.
Ren can't stand it, so is she's not doing it out of unity with her mom?
I gave Ren a stern talking to after that and broke my little promise with Cordelia.

Skiing are full of about the most fun and proud moments I have with Cordelia, I can't imagine how cool it'll be to have her mastering fly tying and sight casting trout in an clear alpine lake or stream.

Raquel's personality coming out dispite her situation

Today I walked up to the door and I could hear Raquel crying from a few steps away.
Once in she wasn't interested in much other then flopping around in loud complaints.  The nurse in charge wasn't having much luck getting her to settle and first off neither was I.  Once I had her in my arms sitting on the couch she'd just rock back and forth in a quick metronome manner.
Her eyes were still bothering her and she couldn't have squeezed them much tighter.
We attempted some of her anti-inflammatory drops, but who knows if any wicked past her eye lashes.

I then started to ask her questions.
Where's Papa?
She points to the general direction of the front door, where she usually first hears him enter and call for her.
Where's your bedroom?
She points back down the hall
This went on for a while and she quickly pointed from her darkness to where everything was.
Her comprehension was impressive.
Which brings me to believe she knew exactly what was up when I mentioned the eye drops and started to fuss and make it very difficult to apply.
Then it was
'Cut the pickle'
I put my two fingers together for her to slash through with her hands.
Except she likes it better when I push her two thumbs apart.
So I cut her version of the pickle then proceeded to tickle tickle her till she made what sounded like a giggle / lion growl.  We did this several more times till I saw a sliver of her eyes peering out.
From the safe zone I asked where her bum was, up goes the little bum into the air with her hand waving at it.
From this tripod position I grabbed her thighs and flipped her over onto her back and she giggled even more.  She quickly flipped back to her front and stuck her butt up again while signing for more.
After 10 minutes of games, flips and tickle attacks she was back to herself giggling and fully engaged in what was going on and eyes finally opened full.

I'm often amazed at her resilience and great nature.
She has every reason to be pissed off all day long every day.
Some days of course feel like she's angry and sore all day long, but it's not really the case.
It's this part of her character that I think makes it so much easier on us as well.

It doesn't take too long to feel pretty good after a few moments of hard play.  Despite knowing tomorrow morning she'll probably have her eyes closed for the better part of the day yet again.  Also that she'll be awake three times during the night screaming and rubbing her feet and squirming in such violent throws it is now almost too difficult for me to hold her from damaging herself.