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.

Sunday, September 11, 2011

Stuck in a rutt.

Renata's parents arrive and Raquel plunged into one of the worst three day period in months.
Not only did she get a pesky eye abrasion she also had a few horrendous mouth blisters.  The last one we popped this afternoon poured blood as if she were shot, soaking the side of her face.
Talk about your introductions to EB.  Even the Colonel gasped (Renata's judo, ass kicking army dad).
Seems all the new nurses get here and everything is peachy.
Then eventually time catches up and they get one of the horror changes, where she's trashing and screaming and material is flying everywhere and we have to take a couple goes at a limb before it's on right and her feet or hands is a gooey mess of broken skin and raw flesh.
Thus was this weekend for Raquel.
No wrong images of EB being a peaceful disease managed well by her parents.
We didn't sleep Thursday, Friday and a good part of Saturday night.
The days were crazy too.
Except I dissapeared like a good little fisherman and caught fish for lunch today

and dinner yesterday.

Both were excellent days on the water.
Total immersion in nature and it's awesome surroundings.

I had to put my food in the sand next to this bears.
Would have been the perfect time for him to walk around the corner though, were in interested in fresh Human instead of rotten salmon.  As I had one leg out of my waders, which aren't the easiest to pull my feet in and out of in the first place.  Would have been funny watching me run down a beach, bare one foot with waders dragging behind me.  Limping and the dragging material getting caught on every other boulder I past.

Ren has semi excellent days with her parents - minus screaming baby every 4 hrs till her max dose was administered.
Renata needs a hobby she approaches with the same kind of zeal I do fishing, mountain biking etc...  It would probably be tougher on our marriage, but at least I wouldn't sound the jerk for having all the fun in nearly every weekend.
Cordelia was Cordelia.  Adaptable.
I have to side track.
While fishing today I yelled up to Cordelia that I had a fish on.  She came running down the beach chucking her baby crabs she was assembling from under the rocks yelling can I bring him in!!!!
I mean how could I not let her try.  Even though my two buddies also with us were having difficulty bringing in fish of their own.
She was great.  She was able to muscle in her first salmon on the fly.  Well I guess it's more like trolling if it's already on the line when you get the rod.  Never the less, she landed a nice salmon, something I couldn't do in my first few tires.
There's that pride again.  Prouder then her first walk I have to admit.
I mean, most kids will eventually walk.  There was no reason to think Cordelia wouldn't, but catching her first salmon.  I think that rates higher for me then those first steps.  I liked the bright interest in demanding a chance to haul it in.
Not sure how Raquel will fare standing on loose rocks knee deep in salt water tugging on a rod with the butt end buried into her abdomen.  Cross that path one day.
When we finally got it to shore I realized it was just on the edge of being a keeper as it was starting to colour prior to spawning.  This type of salmon starts to get green on it's back with a hooked nose, bars on it's side and a white belly.  This one was only showing medium signs of all this.  So I let it go.
Mr. Hoza (Renata's father) wasn't impressed.  Between the language barrier I wasn't able to explain it wasn't an ideal fish, especially if we weren't to be able to eat it for yet another day.  I already had a very nice silver one behind me in a pool made by the kids.
Why be greedy?
Off it went and so did all the other fish, as a guy tossing pots and pans moved in on us.  I guess it's hard watching a couple fly guys catching all the fish with feathers.  The lure to get at our quiet little area we'd maintained for an hour or so was too much and he couldn't help but to plunk large metal bits at the rolling salmon schools scaring the fish and us away.  Once it was clear the fish were gone, so was he off down the beach to shock another school.
Oh then there was yesterday.
After my morning of bliss, catching many many salmon, I thought I'd take the girls for a bike ride.
Raquel loves the bike trailer so in she goes and off we went down to Moja for a coffee.
Renata had arrived just moments before and commented at how important and happy Raquel looked in her two wheeled contraption.  The ride and morning was so good.  Unlike the evening before.  So I decided to push my luck after the required cup of caffeine and take the girls for a slightly longer loop.  I'd look back every few minutes to see if everything was OK.
Of course I forgot to look after a few more minutes then usual and Raquel was fast asleep with her forehead rubbing up against the plastic window of her Chariot.
Good Grief!!
I stop instantly and pull her out, only to discover I was too late.  A large blood blister had already been created.  Then in my panniced tussle she wakes and she goes off.
I had to carry her about 2 kms in my arms pushing the bike & trailer with my other.  Cordelia was breaking down by then too.  With my arm feeling like it was lengthening by 2 cms every 100 meters and nerves getting shot with little miss blood blisters and the princess whining or crying, home seemed to be a million km away.
Oh well.
Life isn't interesting if you can't get through hopeless chaos once or TEN TIMES!!! every week.

It wasn't till this evening that Raquel finally snapped out of her cycle of suffering.
She started to push the clothes basket walking again.  She's really starting to become more stable.
As well she was in the bathroom watching Cordelia bathe laughing and giggling.
That was until Cordelia put her head under water and started to blow bubbles.
Raquel screamed with the look of fear in her eyes.  As if to yell at Cordelia to stop and not drown.  It was rather cute to say the least
I think it's all Renata's fault.  If I were in charge of baths she'd be fine.  She sees Ren's deep down  apprehension for water I guess and is frightened to the core..
rock and roller

Can you tickle the foot of  a Baby with EB?

Monday, August 8, 2011

G-tube in and a Success (SO FAR)

So far.
There remains some issues such as the mess left in her mouth and upper esophagus.
A couple things I'd have been a little more forceful with given a second chance.
IE. getting kicked out of OR before they'd put the IV in.
They basically had me cut off bandages on her one hand and hold Raquel till she was KO'd with what ever was coming out of the hose the Doctor followed her nose with.  I got a good whiff due to my proximity and with all Raquel's fussing I was wondering who'd pass out first, her or me.
I was happy at least the mask wasn't attempted first.

So we struggled something fierce till her eyes closed and her body fell limp.
I was frustrated we didn't put her out first, then take off her silks and cut off the bandage on her one arm.
It was very unnerving holding her naked waist up while she thrashed so much.
It would have been so easy to then be the one to re wrap the hand with IV attached.  It would have been way more secure and so much less damaging later on.

As of course the wrap they did was far from my standards.
Although neither was the wrap I did with Renata, a nurse and the Anesthesiologist in the recovery room.  Although mine was still far more secure and safer for Raquel's fingers, arm, face and palm.
That was the moment I wished we'd been successful in lobbing to get one of our home nurses there for the operation too.  Someone on the inside that could slow things down that few extra minutes to get it done right the first time.
Raquel was a different kid coming out of her drug concoction.  Her eyes fluttering in and out of focus, flopping her body left and right in an uncomfortable fit.  Easy bandaging a sleeping baby then the bumpy ride she was on.
Hindsight and something I'll be a lot more forceful with should there be a next time.
I do understand their position, I'm a civilian, a protective dad and standing in a very expensive room with lots of Doctors and nurses theoretically more knowledgeable about these things then me, plus the hordes of kids and parents in the waiting area, but...

I have to admit I like it when Doctors and nurses admit they are scared of Raquel.  Not scared, but that it's stressful with her in their care.  It means to me, that they are honest, with Raquel's best care in mind and of course it's not a RODEO.  More on Bulls later, bullheaded etc..
The Doctor who did the procedure explained Raquel's stomach wasn't exactly where it should have been.  He did great hand gestures while explaining how he used his instrument to gently move her large intestine up and out of the way and then the liver, but to have them fall back in front as he struggled to keep hold of her stomach.
He said it took 20 minutes to finally grab hold and get it to where he could proceed with the surgery.  With a nervous admission he was moments from starting a new hole.
The Anesthesiologist also used the word Nightmare surgery and post op bandage change.

I like that honesty.  I respect that honesty.
Life isn't perfect.
People aren't perfect.
Of course we expect perfection, but if you are trying and of course you are qualified to try and generally really good at your job, then what happens happens, but next time if there is, I'll be sure it'll be much smoother.  It could have been with little effort.

Like I said earlier, her mouth is a mess, but after her latest pain management dose, she ate well from the bottle..
Just as Simona arrived I had Raquel sitting up in her bed playing ball.  I'll add some vid of it when I get a chance to download it from Simona's camera tomorrow sometime.

She's a super star!!
I love her so much it's crazy.
Oh.  Raquel too.

Yes, Simona is all that too.  She came in waiting on 'pins and needles' I'm told.
Waiting for me to text a time and manner for which she should take over.
Phone died, so I didn't get to finish my thoughts plus a few other little things, such as stress associated with kid in OR!! POST OP!!! and doing best to comfort her once in her room.
We had a nice little banter back and forth about 'how vague' could I be?  Just a couple non cryptic updates on Raquel's condition etc...
I tried a few lame excuses, but she didn't hesitate or let me finish my little demi-lies and shot me down in typical Simona fashion (speaking over me).

As I write sitting comfortably in my home office drinking what will be the better part of a very nice Prosecco, Simona has taken the night shift with Raquel
without wine.
Till now Simona is very set on helping guide and mold Raquel into another perfect human being, as of course all three of hers are.
Since I agree full heartedly I have to relent every so often, in letting her take charge.
To tell the truth, kind of like the Doctors today - if we were in the animal world, she'd be the funny looking cow with horns twice the size of all the bulls beating them into oblivion.  So I'm saving myself, really.

haha.  I'm gonna suffer for that comment.
She knows I love her and what she does.  Compliments just don't pass this mouth or these fingers all that easy.

There were also a couple other interesting developments this evening.
We started to change our luck of late.
The $500 in cash I let fly off the top of my car with all my cards and ID has started to come back in bits and pieces.
First my wallet was sent back in the mail.  Full with receipts (some of which were very important and worth a lot of $'s), ID, Canadian Tire money (cause of how much I buy in fishing gear there, shh don't tell Ren), and a single $5 bill folded neatly between all the funny money.  Of course all those brown 100's and a couple red 50's were gone, but replacing all those id cards would have been expensive.
So thank-you good Samaritan!
buy some tires for your car or bicycle on me.
At least something useful, please!!!  I'd hate to think it was spent on drugs and alcohol.
Just before we were about to leave the hospital, we were told there were some volunteers with coffee and treats down the hall.  Once in the room we were given a block of four football tickets. to see The Lions vs The Bluebommers
On the way out we realized Renata's work pass that gives us 1/2 price on day parking at the hospital was in the wrong car.  Turns out the guy at the gate looked through to Renata recognized her and asked if she worked there.  This was even after I handed him the money for parking in full.  We matter of fact told him where her pass was and were then given the cut rate.

In the end I think I'm back $150 on the $500 lost already.

Monday, July 25, 2011

Raquel pulling apart Cordelia's Butterflywings

'That's for the two blisters you gave me around my chest' she says, 'even if they were loving hugs'.

Wednesday, May 25, 2011

Her Tumb nail fell off not her bitten finger



I'll see if there is Finger-nail Fairy.
I feel slightly queasy.

Sunday, May 15, 2011

Back to ER and Corneal Issues.

Our nights are usually of fussy kid.
Usually it takes Raquel an hour once up in the morning after she really opens her eyes.  For a few days we've figured it was that she was still asleep considering no one in our house less Cordelia actually gets a full nights rest.
Today, she didn't open her eyes till 9pm.
Renata took her off to Childrens to find out what was up while I was off enjoying the rain and placid waters of a regatta that was barely able to finish one shortened race. 

Since you don't pry open the eyes of a baby with EB to see what is going on, nothing happened, nothing was resolved.  And again we had a Dr who looked blankly at Ren and could only offer he's heard of EB.  I love the honestly at least.   It was only suggested we use some drops once she opened her eyes. 
Renata had a tough day keeping her calm and in darker rooms and basically dealt with the emotionally draining day of wondering what was going on.

Once home and seeing the note about her eyes and no one to greet me, I was quickly able to catch up in draining stress about our daughters eyes while I waited for my crew to come back home.

Again I'm freaked out about her sight and having continuous corneal abrasions scar her sight to nothing but shadows and light.  Or worse....
It's one thing that I've barely gotten over, the fact I'll never be able to chuck her in aerial somersaults into mass pillow cushions Cordelia and I set up or take her skiing/mountain biking off into the deep back country and roughing it, in typical jumping, crashing fun. 
It would be tragic not to at least spend some quiet and just as fulfilling time next to the paintings of Goya deep in the Prado, or the texture, sculpted shapes and volumes of the Guggenheim in Bilbao. 
We all have our strengths and passions and sharing them with your child should be goal one.
It is mine anyway.  Of course we'll have to adapt to what comes should this continue in the worst possible avenue.

We still don't actually know if she's scratched her eye yet or not.  It's only occurred to me now that it could be something else. 
Really, EB sucks. 
 "'Excuse me, but someone forgot to give my daughter her Collagen 7, it's kind of important, can we have it - now!"

Tuesday, May 10, 2011

Some Blister Areas Healing well under silks (No bandage required).

Week old, had some reoccurring blisters. Mostly to do with lifting her and forgetting about the wound below.

Two week elbow

I think Raquel will have to live through many indignant times such as having dandelion seeds blown all over her head.

Monday, May 9, 2011

Raquel is testing our stamina

Nights of suffering for all, then morning comes and things are almost normal.
We had a blister on her tongue that was too small to attempt a pop last night, as well she had the scabby skin flap gurgleing at the back of her mouth.  So every once and a while when laying back we'd hear the sound of drowning baby.
It's actually quite frightening looking at this weird white bubble thing flapping deep down her mouth while she's screaming at you and thrashing, up, down, sideways, up, down, kick, stretch, forward.  Gasp Freak. Lunge back in the opposite direction your hands are protecting her from.
One of these times I'm going to be talking about why she had a giant face blister smear.  It'll be because she jettisoned herself from our grasp in the middle of the night where my or Renata's faculties weren't exactly functioning at full levels.  Her core strength is actually so strong that both Renata and I are at the limit of our capabilities in keeping her safe from herself while attending to this or that blister in danger zones. 
I have to admit, this morning I couldn't get out of the house fast enough to go to the sanctity of work.
Even if I'm trading one situation for another in a nearly 50 year old balding, disgruntled Czech who complains and laments nearly any and every issue facing his little daily circuit from parking tickets to Czech Hockey.  Maybe not every issue, I bring up world politics he's a little out to lunch, unless it directly impacts him.  He's not a citizen yet, so when he complains about even his parking tickets I cut him off tell him to become one, vote and then maybe the airwaves coming out of his mouth will become a little more then hot air.
Then if he wins at darts?  arggg.  What an annoying sound of primal monkey chest beating I must endure.

Why do I know so many Czechs?

This my goofy half Czechs with enough Canadian 57 to save them.
Check out the size of that cranium to the right.  It's got it's own atmosphere.  Hopefully it's all brain.

Thursday, May 5, 2011

The 24/7 dose is gone.

This is Raquels first day of free pain.
Free to experience it like everyone else.
It has been a little while now I had suspicions she's out grown her dose.
Only her Tylenol and the higher dressing change doses seemed to help in the extreme cases.

Last night we had a violent fit that was ear shattering.
I had one of Renata's extra pillows firmly pressed against my upward ear while Renata attempted to calm her.  It was when I heard Renata crossly yell "Raquel stop".
This instantly got me out of bed and down the hall bumping off the walls in disorientation.  We (Ren and I) have a good thing going.  When it's clear the other can't cope, you gotta step in.  Renata knows I've handed screaming baby off on plenty of an occasion.  I'm just happy I went to bed at a decent time and was able to spend two hours holding her till I was sure she was down.
It's amazing how strong she is in her fits.
I was holding her with hands down and legs apart while she thrashed for 45 minutes.  It literally took great effort, to be firm but not overly tight that I damage her skin.  It was great when the Tylenol kicked and what ever that was passed.  If I had her strength in the body ratio from her to me, I'd be The Incredible Hulk(man).
She wasn't really awake, but makes me wonder if it's just the normal baby colic?  I once lived below a family where the baby screamed night after night after night.  I couldn't stand it.  I can't imagine the mom, as I only ever heard her songs and voice.
Hard to say or know, even a doctor yesterday mentioned that she once phoned her colleagues at night asking what's this then holding the phone in her screaming childs direction.
Just baby being baby.
Hard, cause we've had no experience such as that with Cordelia.  She just cried for attention.  Which is really easy.
Go to bed!  Then ignor her till she finally figured out we can listen to her yells and cries for attention all night.  Of course Raquel has a leg up on Cordelia in the attention department to begin with, as we're screwed when Raquel starts to figure out the manipulative areas to get attention.
She'll get it. 
Side note a friend forwarded me a very funny story 'Go the Fk to bed'.
Worth a peek should any of you be interested in crass humour.

Anyway, we've reached the no morphine 24/7 miles stone.
The other little thing that's happening now is her opposable thumb grasp.  I'd forgotten what it was like to be holding Cordelia when she was dudu (soother) sucking and holding and squeezing my finger in her grip.  Raquel does that now like a little bandaged crab.  It's bliss feeling her grip.  In so many ways.
Love her,
Love it!

I'm preped for the 2-4 am scream fest.  Yesterday was three in a row.
Do I hear a forth?

Wednesday, May 4, 2011

Derma Silk - A Testimonial. (Recessive Dystrophic Epidermolysis Bullosa)

I've been told by our local Derma Silk representative that Customs Canada is sticking a 17% duty on Raquel's clothing.  This is insane!!!!  Why do we have to battle on every front for the care of our child?  To steal a quote from Daniel, "This isn't Prada" wear!!
Anyway this is what I wrote.

    Our baby was born with Recessive Dystorphic Epidermolysis Bullosa (RDEB).  It’s is an extremely rare genetic skin disease, where collagen 7 is missing in the bottom layer of the skin.  The absence of collagen 7 means the skin has no anchoring fibrils which results in blisters and sloughing skin from only the mildest forms of friction.  Our daughter’s skin is so fragile that even the slightest miss touch with a finger nail will damage her skin.    
We first became aware of her disease when she was born without any skin on her feet and a few spots on her hands and mouth.  Her condition rapidly deteriorated even with aware handling while in the NICU.  Her skin basically started to fall off in huge blisters all over her torso and extremities.  Poorly constructed and extensive bandaging also had a terrible impact. 
When the skin heals with this form of EB it does so in a scaring fashion.  Without proper and extensive preventative care many of children with RDEB end up with clubbed hands and feet due to strictures that happen as a result of the scarring and tightening of the skin.  A host of other issues relating to constant and continual raw and open skin areas are also a concern, the main being; skin cancer, which is among the leading causes of death and concern for people with RDEB.  It should also not be over looked the constant pain involved in having open and blistering skin where a dime sized sore can expand rapidly to 5x in area when over looked.
After a month in the NICU and confident in a few bandaging techniques directly related to protecting her web space (hands and feet) she came home dressed in her Derma Silk clothing.  The difference between how she was able to heal and the level bandaging required was drastic.  Only in rare occasions are we forced to bandage any blisters that are present on her torso, elbows and knees.  Her Derma Silk clothing has been instrumental in letting her wounds heal and breathe.  The clothing also acts as a valuable slip barrier, so that the friction of picking her up happens between the silks and her outer clothing layer, preventing countless abrasions.
Our child is 10 months old and since her 3rd day she has had her hands bandaged 24/7.  We have just started to let her thumb loose within her Derma Silks and with great results over the last 2 weeks.  This is something we’ve been advised against till the age of 4 when she becomes more aware of her surroundings and body.  She lives in a very controlled environment, but this is a great breakthrough in allowing her to better experience the world with her hands.
It has also been a great advantage having the antimicrobial agents within.   Our daughter has had many sores on her body to date and has yet to have any type of infection in areas open to her Derma Silks.  She is able to heal quickly with none of the issues we have when adding more bandaging.  I have been very active in researching other cases of RDEB and can’t stress enough what a help this product has been in every level of her wound care and prevention.  The advantages are so great that I cannot imagine putting any other product next to her skin, ever.
Ryan Hultman.

Friday, April 22, 2011

Shaken Daddy Syndrome

The Kid Is Alright.
But it took her daddy a two days to recover.
It seems only a few weeks ago I was saying that we get a couple days a month to sulk and be sad about our lot in life and that of our kid (s).  I just took my two.
Wow, glad that's gone.
What it took was a great dressing change.
She was very well behaved and didn't mutter a cross word at us.

That doesn't include when it's time to do her hands and the mad flipping she does to try to rid my grip and the first few layers of visco paste.
Her dexterity is raising quite quickly of late. 

I've lessened the layering and stopped the complete wrap of her thumb.  We were given a soft splinting material to keep her with the rest of her species displaying oppose-able thumbs.
In our recent talk with the Plastic Surgeon he mentioned that even one good trauma to the finger could inhibit her range of motion down the road.  People have very different skin types and beside the fact Raquel has EB, will her skin heal tight or keep it's elasticity?  Of course after many broken and re-healed wounds, she will lose her elasticity.  Her feet have long been a glob of oozing, thin red sores with a few patches of healed close to what her normal colour might be.

(Just had a SCREAM FIT, from where I don't know, what I do know is - I'm no longer traumatized by her, as I didn't immediately hand off a screaming baby and hide somewhere till she stopped and was fast asleep for the night.  Which was exactly how the last two nights shook down.  'Shaken Daddy Syndrome'))

I talked today with our nurse that her feet don't seem to be healing deformed and tight due to what has taken place there.
Who knows?
I've slowly decided that we'd experiment with her hands.  It was bound to happen sooner or later.  Just that we jumped the four or five years originally suggested.  The strange stricture in the middle of her palm has forced this maneuver.  The word of encouragement from Casey's mom helped a lot.  Seemed I kept digging up this or that all the while I was talking to Raquel's Surgeon.  It seems her hands were doomed whether they were bound so we'll see what it's like when not so much.
She's in great spirits as I can hear the three of my girls reading a book from Cordelia's room.  Each of their voices can be heard in even intervals. NICE>
I guess that was the end of that valley.

Wednesday, April 6, 2011

Did I mention I dropped my phone on her nose.

Shame after all the tough moments we get I drop a phone on her nose, where it could have easily been avoided..  Somewhere between the phone being too slippery and me doing two things at once, ie. feeding her a bottle and showing her videos of Tripp, which she loves and can't take her eyes off the screen. 
I thought I was going to have to jump off our deck head first as I wasn't sure it hit her eye or where.  Total sickness. 
Cordelia remarked to Renata from the back room.  'Daddy said a bad word.'
The next day, at lunch was her actual first eye injury, to help put the rush to hospital in perspective.

We had a little mouth blister this evening.  We shortsightedly just finished changing her clothes so that she would be clean of blood going to bed. 
Not so much. 
Again she looks like a vampire with a bib of blood, but a beautiful Vampire at that.  The yellow of her shirt has gotten rather orange.
Once popped, without my recently typical missed shot, she was a pleasure and melted to sleep in my arms, sans iphone. 
I'm quite put off by this as I'll be forced to look at the many little Milia after the open wound has healed and gone away.  The Milia are those damn little white spots that form on her healing skin, her nose area along the side of her eye is full of them.  Thanks to daddy, add another 20. 
A side note - normally we wouldn't buy Renata a leopard print house coat, but Simona thought her old one (not leopard) was too old and no longer comfortable, so she tossed it and inserted this one.
It's sexy,
I think,
or so I'm told?? 
At least I get a giggle when Raquel breaks out into her fairly common playful ROAR and Renata is wearing it close by.

Wednesday, March 23, 2011

Pain Management a Success.

We've luckily gotten past the bump in the road.  
She had been getting a very regular dose of Tylenol, on top of that we've had to use her dressing dose of morphine far more often then in recent memory.  In the last two weeks it was a given we'd be forced to use it, for each of her changes.  This was something I was very proud we'd been able to work past because of either how well her bandages were working or how we'd been able to avoid many other blisters and issues due to her attentive care (Renata, Nurses and Grandparents).  
Of course we have had the odd blip where things lapsed into chaos, but a week or a few days would go by and we'd get out of it and she'd be a happy kid. Many moments in a day we'd be able to look at her and see a bright, beautiful happy child (yes she's always beautiful, but dark clouds of grumpiness SUCK! and can be very trying to one's outlook).  This past two weeks or so it was getting difficult to see that playful fun kid on a regular basis, through my eyes anyway.  
We were simply not able to get over the hump.  
The sores on her feet as evidenced by the recent photos shows the obvious pain she would be in or what I now suspect being a prime culprit - 'The Itch'.  I've started to believe this is one of the issues which drove her and us to our wits end through the evenings.
She'd wake in an uncomfortable squirm rubbing her legs and feet ferociously.  
I have my own little battle with psoriasis and it finally occurred to me, 
'When is it most itchy?'.  
When I'm at the edge of deep sleep or calming down for the evening.  Depending on what I've eaten (chocolate) or drank (beer, scotch) I'll go into fits of scratching mayhem that drive Renata as batty as myself. 
This pushed us to make an earlier then scheduled visit to our pain management Dr.
After some deliberation of what we are seeing in her and how we were able to get past other cycles of pain and obvious suffering, it was decided to up her daily dose for the time being by 50%.  Same dose every 4 hours not every 6 as was a couple days ago.
What we have since is a wonderful baby, back to normal.
Talking, engaging, happy to be held, interested in everything, content.  No grog, no dreary eyes, no constipation, nothing negative (just yet, but this is being monitored very closely).  
We had to leaned on Janet today to come in for help on her bad foot for a change outside the weekly Monday Wednesday Friday routine.  The foot was smelling too much like a brewery and the green layers in her bandage was reason enough to get it cleaned daily.
Today's change went really well.
Honestly I was shocked at how quickly this foot had healed in 24 hrs.
March 21st, unfortunately it's covered in Bactroban but it's easy to see how big the red raw area is

March 22nd and a solid 24hrs of pain management

What a difference.
She had been waring on me a bit lately.
As much as I love her, it is very difficult attempting to be the calming influence when you are spending half the time while holding your child in panic struggling to wedge a hand or various blankets between her ankles so that she doesn't continue to push any of the remaining and healing skin off her feet.  
Deep into the night over the past two weeks it would often require both of us to hold her down to take either her morphine, Tylenol, or get her started on the bottle or simply stop her thrashing.  Otherwise her feet and face get pounded which of course eventually occurred.

Anyway, things are good and I expect a good sleep tonight.

This is Raquel in her first experience with a cat.
I was very proud of her that her first inclination wasn't to pat to the head of a cat, but to give it a firm right jab to the chin.

That will teach this cat not to sit on the couch next to a kid with boxing gloves.

Wednesday, February 23, 2011

Raquel did her first day of Montessori

Renata was very happy with the little things she could do and her focus.
Again, normal kid with some issues with her skin.
Dressing change day.
She only has a couple dots here and there.
Should be good.
Well, not including the horror flick that is her mouth.

Wednesday, February 2, 2011

Chaos and our first ambulance trip

Came home from work, started my dinner as Cordelia was taken out to go get her Beau Jakob (from across the street) with his mom.  Renata was about to go to the airport to welcome another Czech beauty to Vancouver.  As I started to eat, Raquel in my arm she started to fuss and Renata closed the door and gone for the evening.
oh, back track a few moments.
About half way through cooking my dinner (heating up Renata's cooking - mmm) I walked into the living room and Renata was on all fours head down in some strange breathing pattern.
'Having a panic attack?' I asked, not in the warm soft caring mode I'm sorry to admit.
Yes she was.
So I asked her about her day and all was well.
So then I gave her a nudge and a brief pep talk. 'buck up my dear'.
Foreshadow maybe.  Mothers intuition?

In goes the bottle, out comes a mouthful of blood then directly into a choking frenzy.  A couple seconds go by and no gasp.  She was able to get in a few then back into it with deep cries between gasps and the death gurgle you hear in war and horror movies.
Luckily my mom was near by to help out.  I'll not throw her under the bus, but it's really difficult thinking of how to care for a child with breathing difficulties when you are wondering if you'll have to call another ambulance for the two of them.

After four of the long breaks in breathing I called 911.

Basically I was thinking I could get some advise on the line, not exactly a fire truck and an ambulance and five guys in my house in 10 minutes.
As they walked in I started my speech about the rareness of her disease and the latex gloves they had on un-lubricated would create blisters the size of their fingers, nearly instantly if she was handled in the wrong way.
They each were extremely respectful of her situation and listened.  By that time we had (mom) calmed Raquel, Mom was doing fine she was back in my arms,looking about wide eyed.
In a few occasions she'd cough and this strange bubble would come out her mouth.  I realized early on it was a blister that had broken and blocked her airway, but I wasn't sure how big by that point.  The weird bubble coming out her mouth freaked me out to say the least.  I can also say with firm belief even the hardened ambulance medics and firemen were in uncharted territory and had an uneasy look on their faces.
We decided we'd give it a go and try to pull the blister out with some excellent tweezers they had (I definitely have to get me some of those), the medic suggested I be the one who do it.


Mom and and the medic held her steady while another medic shone a light into her mouth while I pulled at the massive skin flap that was her ENTIRE MOUTH!!!
The part that really got to me was the neat little hole that appeared to be where her uvula was.
It was shocking to see the entire layer of skin in her mouth including her tongue come off.
While I pulled it was attached very firmly at her lips and I felt a weakness deep inside me, as I tugged and watched it tear at the firm skin at her lips from the inside outward.  I did my best to twist the tweezers to rip the bubble to create a bigger hole and maybe stop it from covering her blow hole, since it wasn't coming out in pieces easily. Problem is that skin is way thicker then the skin elsewhere on her body.

We agreed it needed to be cut off.

I suggested scalpel.

geesh no wonder I'd not get into medical school with half baked thoughts like that.  A firm C+ average and a passion for art not anatomy wasn't going to make me much of a doctor.  Clarify, inner body parts and their workings didn't used to be all that interesting and chemistry diagrams very very boring,  I like anatomies just fine.  Brains are interesting too, but still way too much schooling.

The medic asked or suggested that we best take that trip to the hospital.
I agreed.

I tried to quickly assemble my 'go box' or 'butterfly box' (red box) but was dazed and basically forgot most of the important contents as I'd not yet replenished it from our ski trip.
I did have time to have a vision of doing this procedure in the gas station along the #1 highway at Lyton, with a few boxes of -40 window fluid as a table with the many insightful slogans written everywhere to keep us company.

Once in the hospital I text Dammit Janet, to tell her I was at her place of work and sent a pic of Raquel with her mouth open, clearly in the ER intake hallway. 
the circle is the hole of the uvula fallen forward, The white part isn't her tongue but all the skin from her pallet and tongue
It took some time for her to reply, but she was in the hospital before long to help out.  Great considering they are her colleagues. I didn't ask, but knew I didn't likely have to, the image was probably enough to maybe motivate one of Raquel's personal nurses to some unpaid overtime.  I was very grateful she came. I had to also lean on mom to bring over some of the things I forgot in my moment of haze.
After going through the spiel again about her skin and the dos and don'ts the doctor figured out we give her a shot of a morphine and midazolam to calm her before we tug around on that flap.  M&M's

hehe Renata just showed me the tweezers the medics forgot.  Wonderful, the silver lining.

Back to it.
We held her down while the doctor pulled out the skin flap and cut it off in two tries.  There remains a big flap at the back and it still flutters with her breathing.  I can hear the flutter now while she sleeps beside me on the couch.  She's on her side so that the bigger flap lays flat to the cheek.

The choice was, make more damage trying to get at it or let it go.  We let it go.
The other part of the silver lining was I was able to bring up the fungus and smelly foot from our last dressing change.
We set up a tray and did a foot change there in the ER, while a nurse took a swab and handed me the bactroban type ointment and we were on our way.
Dammit Janet you rocked!
I'm very grateful I didn't have to train a new nurse how to hold her or take up the ER nurses time either.

Although she did text me later to poke at my resolve saying she saw me waver when the Doctor had the scissors and was cutting the skin flap very close to my crying babies lips.  He was young and agile so it passed quickly.  But it was still interesting to see him slump his shoulders in relief when he realized we were done and he didn't have to go back in and it was a seeming success.

By tomorrow morning at 10 am I'll judge if it was a success and that I didn't have to see him again.

I have those wonderful tweezers now, so just as long as Renata doesn't go into another panic attack we should be able to nip it.
We just don't have the M&Ms in our repertoire for sedation.
I have to admit. I haven't seen Raquel that stoned since one of the first morphine doses she got while a couple days old in the NICU.

It's wearing off now though.
I foresee very little sleep tonight.

hmmm where's Cordelia??