Tuesday, August 30, 2011

Baby Luge and a big blister.

I should have know better, but it seems when Raquel was flopping down and hit Cordelia or the ground in the few times around when the video below was shot, it created a blister that eventually wrapped right around her elbow.
Oh well.
As painful and ugly as it looks, I'm not sure I'm willing to stop playing with her like that.
Just be a little more sure obstacles such as her sisters knee isn't in the way.  That's twice in a week that her knee has been in the path of Raquel falling and out of control.
It's a toss up.  Normal baby fun or girl in a bubble.
It's so f'n cruel this is!!

Last nights outburst from Raquel was something.  It must have been the ITCH!!
I held her tight from her smacking herself and it took nearly all my strength.  She is so strong I can't believe it.  After 20 minutes of holding her so tight she couldn't move, I think she tired her self out and passed out.  I think the benedril (sp?) helped keep her out and our night became peaceful.  But it sure was an all parents on deck situation for nearly an hour at 2am.

We've started to have nursing issues again.  We have lots of hours but there isn't anyone to fill them.  It's interesting as we've started a slide back into chaos again within the household.  It was great back when we were getting the hours filled.  Things started to get done around the house and I was actually able to work full time.  Slowly, not the case anymore.  I have no idea how we'll survive once Ren is to go back in January part time.  NO IDEA..  At least Cordelia will be in Grade 1 and occupied for much of the day.

Sunday, August 28, 2011

Day Three

Was having a hard time getting her to sit still.
We took the grand folks out to the river for lunch and a walk along the water.
HOT today. wow.  Forgot what it was like to actually feel warmth.
Baby luge.
We've had two nights in the last three where Raqu didn't bother us in the slightest from 9pm to 6am.
This morning I didn't know what to do.  I usually use her as a morning waking alarm.  As she's up somewhere around 4am with cries.  I can then do the snooze nap thing on my own till I'm supposed to wake if it's earlier then 7.
In fact Ren and I almost never have to use an alarm.  We're always up at what ever time we need to.  This morning I was to meet a friend at 6 am.  My eyes opened to the numbers 5:50am.
Wow.
Amazing.
Almost didn't know what to do with myself sleeping so well.
Unfortunately Ren couldn't sleep.
The few nights were she can, she's up all night thinking.
Too bad Soo sad.

Friday, August 26, 2011

arrrghh!


Day one of the big lip mash.  She found Cordelia's knee during a header.  Fat lip & no more skin on chin or upper lip.
Won't this look great tomorrow and for the following 7 days.

Oh right, EB!

I've been very good at putting things out of mind and getting on with task at hand.
After my few day break of the on going difficulties of raising and keeping a baby with serious issues happy and content I get my dose of reality in my first evening back.
The dressing change was excellent, Patricia (nurse) did a perfect job in doing Monday's so that Thursday's went without glitch or peep. Thankfully Dammit Janet and her #2 child was in for help so Ren could disappear for a few moments should it have gone sideways.
Afterwards I decided to take my girls for a seawall walk in WV.  On the way down Raquel kept putting her toy in her mouth.  I told Cordelia to watch her and not let her do it and when she did stick something in her mouth that she tell me.
"Dad, she's got it in her mouth!"  I quickly look in rear view mirror to see Cordelia yank it out.
Noooooo!! I exclaim.  Within seconds I peak back to see Raquel's bloody smile.  Blood lining her lips and eight front teeth.
It was only a quick walk so I didn't bring the "GO" bag to have the stuff to clean her up properly.  In the following moments the blood was gone and transferred to her silks around her hand.
Nice.
BLOODY hand for our walk.  Better I guess then looking like a vampire.  This way it just looks like she gave her sister a good pop for good measure.  Something of course I would have done to my brother back in the day.
Proudly walking in the setting sun with my girls along the promenade we get the usual looky loos who would want a glance at the baby.  With Cordelia it was always "how gorgeous!".
Hmm.  With Raquel it's a bit different.  Depending on day or especially lighting conditions we'll get the gamut of comments.
In that light all her blotchy patches of healing and healed soars were evident as well as a few new smaller ones.  We'd get the smile till they got a good look then  
silence.
Skin, beauty and how deep?
A few times Raquel would even do a wave with her bloody mitt as if to say hello.
giggle giggle.
Sending off a possibly uncomfortable few moments of explanation or the EB awareness conversation.
Regardless, it was a nice walk.
Raquel loved the dogs running around and looking at all the funny faces.  Hopefully she won't get my sense of peoples thoughts. Cordelia stopping at every blackberry bush to fill her face as I yelled out 'pick only the ones above your shoulder!!!!'
Then the 2am scream fest for what I have no idea.
Baby being baby?
Or did it have to do with the moment I could hear Raquel choking gagging from down the hall as Renata was about to attempt a small feed?
Thus, is our life.

Thursday, August 25, 2011

Family did well in my absence

I was away for a few days and had to let go of the leash a little for letting someone else do a dressing change.
I'm back and Raquel seems in  very good spirits.
Some of the nights weren't all that great, but they seldom are.  Except last night.
After a 14 hr drive I was rather exhausted and needed a decent sleep.
Raquel slept right on through.  Usually she has a once up at midnight feed. 
WONDERFUL.
I'm very impressed with our gathered gang that took over the change.  Andrew and Simona helped one of our nurses, whom made a cardboard manual for each foot and hand to better make sense of the order and cut size of the somewhat complicated layering I've created with her visco paste and foam.

I'm very impressed.  I don't have that type of order in my life.  I'm a watcher and doer.  Takes a while for the doing to be of use, but eventually I get there.
As a dad I can get away with some mistakes.
As a medical professional the stakes are slightly different.
Where was I?
Bella Coola fishing amongst the Grizzlies.
Last morning just before I was to start my drive I decided at one last chance at taking home a fresh coho or pink.  But after 3 fish in five cast and holding the line of the last of these fine fish I heard a crack of a branch just below me on the river.  A big bear looking rather under nourished was walking up towards where Karl and I were immersed in our only second double header.  Both of us having to straight line the fish to snap them off as quickly and as quietly as possible not to let the bear get too much of an idea we were in a battle with a fish.  In the panic to get back up to the boat launch 60 meters above in waist deep current I slipped, fell in and soaked my self (third time in two days, Karl was not impressed by the other two as it meant an unscheduled trip back to the cabin to get dry clothes), but this time I had my phone for some documentation of a few of these fish, also losing two fly boxes in the open chest pocket (yes - yet another costly bone headed maneuver by me).  Anyway, I made it to shore 60 meters ahead of the Big Brown Griz and back to my car.  He stood staring at the water on top of a downed tree just feet from the only place we could exit the water.  Looking intently to see any dead or dying fish to snack on.

Last year one of my buddies had a Griz charge him twice while a fish was splashing about at the end of his line.  So this time I was very careful not to let the fish break water before I was able to snap my line.  It's slightly different being on dry land when a bear charges then being a helpless in a strong current.  As both my air horn and bear spray were slightly submerged in my gear.
Anyway, it was fun.

No harm no foul.

haha (sound of nervous laughter)

If we were at this part of the river when the Griz showed himself, ahhh.  Not fun.  He would have been 10 m to my right and a 10 second swim for him or bounce through belly deep water.
This was the honey hole, once I figured out the fly, depth, drift and retrieve rate I was having a lot of fun.  Glad we were 100 m upstream at that time.
I'll get some more info on the kid in the last few days after work.
We weren't so interested in taking the route most traveled.

My friend, blurry for a reason.

2140 kms of road


Monday, August 15, 2011

Vancouver is an amazing place to live.

When not fighting EB or other things this is one of the better ways to enjoy where we live.
Helps knowing someone with a boat and being able to learn on the job so to speak.
We were leading at this part of the race.
Nearly halfway through.
So best to take a picture and pretend we smoked them all.

Sunday, August 14, 2011

Amazing kid.

Raquel has a giant sore on the better part of her nose for the last few days.
I think she got it the day we came home from the hospital on Wednesday.  She was crawling and didn't quite have the strength and did a faceplant and dragged her nose across the carpet.  When I came home from work that day I felt slightly sick to my stomach.  Thursday it had just gotten way worse and looked so awful it continued to make my stomach weak.
I'm getting  very good at dealing with no skin on her feet, some of the sores on her knees and elbows.
I'm even OK now with the plastic device just right of her belly button.  But giant areas such as this I wanna cry.  This one is particularly bad as it's on top of skin that just started to heal.  She basically had a hole there right down to the very bottom layer.  I've definitely noticed not all blisters she has are equal.

It's taken a few days, but I see past it now.  Renata who usually has a weaker threshold then me for some things with Raquel has been going on and on about how beautiful she is these days.
Of course I think she's beautiful.
It's just EFEN painful to see something like that, and that one's gonna be a nasty scar for certain.

Anyway, Cordelia and Raquel were practicing their Doctor/Nurse skills the other day.


Now I too have been in that mode where every time I get close to Raquel and we're happily playing this or that on the floor, or she's laying back on my lap on the edge of sleep, I stare into her blue eyes and watch her long lashes and am full with pride, love and admiration of my beautiful little girl.



An old dress from Roo for Cordelia.  Thought it would camouflage Raquel's visible sores
The two of them are watching Grease for the bagillionth time in the last three weeks.
It's basically on replay.  Every time Raquel gets fussy, Renata, Gabi and Cordelia turn it on.
Cordelia instantly checks scene selection and goes to the last song where Olivia Newton John walks up in the black suit and says 'Tell me about it STURD" to Travolta.
It took a few days to explain that she was saying STUD.  Since my wife and Gabi are ESL the subtitles are always on.  So it was easy enough to push pause and ask her to phonetically pronounce it.
So now she can sing all the songs with 80% of the words.
JOY..
Raquel joins in as well.
A few times, just before a scene or part of the song moves on she'll mimic the sound or cadence in her Raquel talk.
Very FUNNY.
The two of them have had Renata and I giggling quite a bit lately.

Never mind the story about the Stoma and weird smelly discharges at G-Tube.

Saturday, August 13, 2011

And I thought the G-Tube was going to make life easier.

Not exactly the case.
I also made a statement that using a bottle with Raquel was basic cruelty, due to how much damage is done to her mouth.
After a few days of feeding her from a little bag attached to a pump, I'll reconsider.
It takes 20 minutes to feed her with a bottle.
Start to end with the g-tube (that's cleaning the bags etc) it's an hour.
30 minutes to run the machine, a few to prime then lots to clean.
So far Gabi is doing the cleaning job, but at 2am it's lots of work.

Then there is keeping up to what the nurse says with her feeds.
Up till now we've been feeding her when she's hungry.  Easy.
But she's supposed to be getting said amount of calories to gain weight etc.
Of course it will change with many factors, but first we had to figure out how much she'd take.

Renata on our first night home couldn't sleep because she was worried she'd puke and choke and that would be it.  So fear kept her on the couch all night with one eye open.
For me that night was as peaceful as when Simona was at hospital looking after Raquel.
I didn't hear a peep.
I was shocked to hear it went so bad.
Friday morning I gave her the set amount and filled her past full.
She puked it out. 
Well then, the G-tube company needs a auto stop feature like with gas pumps.
I'm sure there could be, except if the kid has got gas to begin with, I'd expect you'd not be able to feed them at all.  Too much back pressure.


On Thursday we started to notice some more discharge around the area of the G-Tube.
First it was clear.
Yesterday it was yellow and almost foamy around the mepilex.  With that yeasty smell of her foot when it's been raw for an extended period of time.
We made a late night call to the Surgeon on call.
Raquel the whole time was in excellent shape.  Happy, playing and not too much fuss.
We didn't get a return call that night for what ever reason.  Which was fine as Raquel only woke up twice and wasn't much problem.
We fed her from the bottle and it was fine.

In the morning there was a large ring of wet discharge around the area.  We made the call again and finally got through.  The word was to watch her.
We watched for the rest of day.  She'd have the odd hot flash and she'd be sweaty, but would go away quickly.
This evening, moments before I was leaving with Gabi, my brother and buddy for the free Lions game we got tickets to in the hospital (which was worst game I've seen ever) we notice that the discharge around the G-tube was brown.  YIKES!!!

Phone call back to Hospital.
Raquel has a 8:30 am appointment, Dr. said it would be a better option than standing in ER for hours this evening...
Even with Raquel's current VIP wait.
I can confirm it's not bowel back up.  She's pooping like crazy.

Oh did I say that I had her on a trampoline bouncing shortly before we noticed the brown?  She was having so much fun and was pointing to it with Cordelia Gabi and I playing that she had to join the fun.
On a lighter note.
Cordelia was jumping around into the pool at this same party.
It seemed boring to me that she'd just stand at the side of the pool and jump in.  So I asked if she wanted to do a flip in?  It took a few minutes to convince her it was a fun idea.
It took just as long to get her to stop crying due to all the water that went up her nose after she landed a decent full flip lost hold of her nose and felt the pressure behind her eyes as the water slammed up her nose.  Good thing she nixed going off the diving board with my help.  She'd probably further over rotated and done a face plant.


Thursday, August 11, 2011

Back to even $500

Kind of.
Dad went to the Little League Canadian Nationals.
It was in a park both he and I played in as 12 year olds.  They'd renovated it since I was there, in fact the year after I moved on.  The pitchers mound was actually dated 6 or so years before he got to it.  Funny to think we pitched off the same little hill as kids.
Anyway, he did the 50-50 draw and while they were reading out the numbers both people on each side of him had to tell him he won.  So he pulled in $350.  So in theory we're back to even of the $500 lost.  I'll not see it, but I'll accept that as a win for all.
Makes losing $500 that much more palatable.

Wednesday, August 10, 2011

PICTURES FROM G-TUBE HOSPITAL STAY

FIRST G-TUBE FEED WITH NURSE AND GRUMPY KID
The g-tube feeding went well.  It was forced, although anticipated after the operation.  Her mouth and esophagus was so badly damaged by the breathing tubes while under she was hardly able to swallow.  Copious amounts of saliva would pour out of her mouth drenching her shirts and blankets around her face.  There were also plenty moments where she'd choke, gasp and cough on the broken skin and resultant flaps hidden beyond the uvula.  Then we'd try to look by having her on her back and ended up listening to that unnerving gurgling sound of drowning baby between her hollers. 
Something to be happy about was - we were able to jump the stated 48 hr post op wait to start the G-Tube feed.  I can't imagine if we'd gone for another surgery and all of this would have happened and we'd not been able to feed her or medicate her orally.
This whole elective surgery was for this exact reason.  We know it was a matter of time before something really horrible happened in the upper GI tract and a vicious catch 22 would happen.  We can now rest somewhat easy that the G-Tube is to be her life line. As well we can now avoid nearly all sucking action of her bottle feeds.
 
LAST EVENING IN HOSPITAL
The family unit after a dressing change that was insane.
I was on the edge of a rage that blinds my rationality and makes my personality slightly caustic.  Slightly, so I'm told.
haha nervous laughter..
Raquel was also on the edge and I managed to get Dammit Janet and Gabi pissed at me.
At least they left the change room wounded after a couple sharp words.  I had to though.  We were set up in a small cluttered box with tonnes of medical equipment for helping poor kids in a way worse way then we were in.  We had no window making the confines amplify Raquel's angry cries.  Every time we laid her back she'd go ballistic pushing herself all around, making it difficult to keep up to where her hands and legs were from my pre-cut tray.  Again something to do with her throat.  Not sure how being horizontal aggravated it.  Adding more bodies in such a small room would have been difficult.  As well Simona and Janet in the same room with me while I'm stressed?  Forget about it.  They'd be all over me for things that got nothing to do with the situation at hand.  Which of course would make the situation that much more unbearable.  I can handle them if Raquel is in her tranquil state.  In fact it's fun that banter, but under no circumstance will they be allowed to be in a space where I'm already struggling to keep it together. 
The nurse from the unit was a great first time helper and got a good idea what the horrors of EB can be.  She apparently is around for burn dressings for other kids so much of what she was doing had been done before.  Just not holding a kid that's squirming where a wrong grip would result in massive skin trauma.  She mentioned how similar some of Raquel's larger blisters (on her foot) looked like the skin had melted off.  This nurse was also there for us in the first feed.  I have to say she was attentive and intuitive to what had to be done and did a great job all the way through.


THOSE WHO WERE LARGELY LEFT OUT OF THE RIGMAROLE
 This crew I have almost no idea what they were up to in the last few days.  Mom was amazing keeping these two younglings happy and not in a state of neglect when Ren or I finally showed up.


ESCAPING HOSPITAL TO FRIENDS HOUSE FOR AN HOUR
I told the nurse we were going for a walk.  Ended up at Simona's house and quickly had a beer in hand.  Renata was there passing through on way home, we had a fun few moments talking and keeping on the lighter side of life.  Raquel was hamming it up and comfortable.  It was clear the fresh air and the walk was a good thing.  Plus she didn't have hospital staff constantly intent on checking her with cold metal instruments.


PLAYING ALREADY IN LATE AFTERNOON
Raquel hardly missed a beat and was playful once past her drug induced grog post OP.  We played ball and a few other dexterity games.  She talked a little. She's tough.
Yes that reminds me.  I got my first "daddy!" as she pointed in disapproval at me for attempting to go out the door.  She needs a bunch more words of vocabulary.  Daddy don't go!
Although the eyes and the 'daddy' was enough to melt my heart and forget about where I was headed to spend a little more time with her.
Still at Simona's playing Hospital Fugitive

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.

haha.
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
and
gasp
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.
haha
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
Nice.
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.
Nice!!


Friday, August 5, 2011

Back into high levels of unknown pain.

Last night and still continuing Raquel is in fits.  It's really irritating when we can't put a finger on it.
Her nose is plugged.  That would piss her off. But that much?
She has many blisters in many areas larger then a square inch.  That would piss her off.  But that much?
She's gurgling again and may have an esophagus blister again.  That would piss her off.  But that much?
She's got gas.  That would piss her off.  But that much?
She likes to be up right. 
So Esophagus? 
Maybe it's the Itch? 
Or hunger but can't eat because of esophagus? 
Although it's probably all - can't breath, itchy, sore, esophagus irritation and hunger = no sleep for Ren, Raqu and I.
We were able to get her down and quiet for odd stretches last night
2hrs.  20 min.  5 min.  2 hrs.  5 min.  2 min. 20 min etc.
Then I tried the music therapy.
Put my little ipod speaker close by her head and and listened to Ray LaMontagne laying by her on the floor in the living room.  He's one of her favorite artists of late.  Put it on and she starts rocking and dancing.  It took two songs and had her out and laying somewhat comfortable.  She'd sigh or kick every once and a while, but generally out and resting. I'd just restarted the album when she started to stir again.  She did her little tripod movement wedging her head to the couch, as I opened my eyes I realized she was way to close to the speaker.
Within the second it took me to get on my knees and get ready to pull her away, she did a wiggle and gone was a very large area of her cheek as she managed just a graze of the metal and plastic speaker.  It's freaking rounded on all sides too, not exactly shaped to maim. 
Joy.
Then she got wild again.  That's 5 major thrashes for the evening.
One blister on each eye lid, one still needing to be popped, the other just a skin smear like her cheek.
Who knows what else she did to her feet and hands in that time.  I'd put money on that atleast one of her fragile feet is gonna be a bag of fluid by dressing change time.
Oh, no dressing change today.
Well, we'll probably have to adjust that..
Yesterday was our pre-op.
It went well.  Although I get very nervous when the doctor used the words.
'We've done that Rodeo before'.
Happy we had that Debra hand out of Surgery and Anesthetic tips to be scanned in a millisecond by the doctor and handed back.  Of course, that steer has been ridden before, nothing to worry about I'm sure.......
I'm happy they've agreed to let me set her up in the operation room then come back in once they've done.  Hospitals and Raquel are just flat out scary.
Too many people with a job to do.
And it's a job, so the cavalier bull rider shows up once and a while and maybe doesn't quite get the full assessment before diving in.
Not saying that exactly about the Doctor we met yesterday, but believe me when I say I'll have my eye on her.  She did say some right things though. 

At least I was very comforted by the post op area and staff.
Monday.
Got to keep her in good spirits till then...
Hopefully last night resolves itself soon...

Wednesday, August 3, 2011

Not exactly a play Raquel will be able to take part in.

Every few minutes someone got hurt.
A few bruises.  They were relentless.  It started off as a simple game of rugby/soccer and ended up in a game of get Ryan.  There was two more, but were off out of frame nursing injuries.

Tuesday, August 2, 2011

Cordelia no longer has the biggest catch of the year

Except it's taken me all summer and 10x (100X) as many hours.  BUT WHO'S COUNTING??
Raquel devoured it too.
As many little mouth fulls as I put to her mouth, she ate.
In fact, for the first time ever, we had all finished eating and she was still at it.
Pointing and mmm! for more.
Exactly
Mmmmmm, fresh pink salmon.

Dad acts like teen and Cordelia swims.

Raquel was pretty good during these days.
Although her best two nights were the drives up and back.  It's still rather difficult listening to her wake and start fussing and rubbing her legs and face like a wriggling worm on hot pavement.  We've slowly become less quick to her and it shows in her face right now.  Lots and lots of little circles.  Irritating.
We've decided to only travel her at night so that she's guaranteed to be out for 90% of it.
It's worked well.  Except the last two drives have made me basically useless the following day.  Again, Ren is tough.
We brought  Gabi (still here from Czech) and Dammit Janet's middle child.
She's been a super star helper.
At the age of 12, she's amazing.  Gabi is good, but she's a teen and getting more teen.  haha, I'm gonna get punched when she reads this.
Yeah?  Where did she learn that hard physical behavior?
I thought the Hozova family, even though her grandpa was a colonel in the Czech army with serious black belt levels in Judo, were a peaceful family.  With basically all girls.  The only boy under the umbrella of Pan Hoza is 2, so no rough housing exists in that family, yet I get beaten almost daily by her?
Anyway Dammit Janet's wonderful child holds Raquel right and I certainly trust her beyond almost every adult that has asked to hold Raquel.  Although, I did have a nervous gasp when I walked into a room as saw she was feeding Raquel.  I assumed Renata had shown her the ins and outs, so I rolled my eyes in hope and kept walking.  No pain and suffering afterward, so done well.
I guess I'll have to wait at least another 15 years for her to get hired as a nurse, or maybe she'll be the super geneticist that'll cure her for once and for all.

It was interesting being one of the guardian figures with two teens around.  It turns out the only real teenaged obnoxious behavior had an epicenter radiating from me.  Oh right, I'm the one who taught Gabi the art of the jab and take down.  Problem for her is I out weigh her by 100 lbs.  So there's no take down on the horizon for her.
The teen aged style brain meltdown of the weekend terminated in a game where we were trying to get Renata set at the edge of the dock, so Cordelia could push Ren into the water.  As Cordelia had seen me chuck Gabi off numerous times, usually because she had it coming...
Both of the teenagers were on the dock and some what blocking me from Ren, as they knew what I was intent on doing.
Helping Cordelia of course.
The girls were distracted by the nervousness of Renata verbalizing her worry over possibly kicking Cordelia with her heal on the way in.  So just as Cordelia started to push Ren's butt I gave a little shove from the top.  In goes Ren, but Cordelia seeing Renata go in so fast managed to grab a hold of her swim suit and went in with her.
Till this date, Cordelia only goes in the water with a life jacket.
Renata and I have tried a few times to get her to swim, but she's too nervous.  (Like her mom - totally capable, but some strange mental block - The movie Ants comes to mind when the line gets broken and the stranded ants start to panic, yet the route maybe just a quick and simple right and a left to get back on track, but the panic of not seeing the straight line clouds all rationality and common sense).
As I'm watching at my daughter go over the edge and plunge below the surface of the water, I some how make the conscious decision to wait an extra split second to see if she continues to sink to the bottom or makes a self recovery and kicks herself back to the surface.
She did make it quickly back up and was kicking and waving her arms in a wild dervish.  I called for her to come closer to the dock and she started to come back.  It was about then that Renata realized Cordelia was in the water too and gave her a push toward me so I could pull her up.
Followed by some seriously cross words from Renata....
I didn't hear them anyway, I was full with pride.
Cordelia was swimming without her life jacket.
But once up Cordelia went into a screaming fit but mostly because her clothes for the ride home were wet.
Then she was cold, then it was something else, but not because she was basically pushed in by me. The moment I saw Cordelia past the climax of being pissed off, I looked her in the eye and asked her quietly if she wanted to know what just happened.  I had to ask it a few times in a calm voice till she finally looked me in the eye and asked what?
'You swam by yourself without a life jacket'.
That was the end of that.
Within minutes she was bragging to me, Grandma and later Renata she swam by herself.
I'm still impressed I was able to turn that situation so quickly from how stupid I was to the more important accomplishment of Cordelia swimming.
Although on the drive back, when I left my wallet with lots of cash and all my cards on the roof of my car while gassing - I was again stuck with 'how stupid was that?'

I don't feel like talking about the deep skin flap gurgling in Raquel's throat during the dressing change the other day.  It followed some gagging 18 hrs previous, as well as a wild 30 minutes deep in the night, ending in a blood stained saliva trail coming out the side of her mouth.  She basically fell asleep the moment it started to trickle out of her mouth.  The relief of a big bubble clogging her mouth and painfully pushing more skin away from it's fragile anchor was obvious.
I won't say what her going limp and back to sleep so quickly after such an event reminded me of.


The G-tube can't come quick enough.
As scary as it still seems, August 8th will be a new era.  We've had lots of well wishers and reasons not to worry.  We are actually pretty relaxed about many things these days, but still.  Plastic pathways to a stomach is just flat out bizarre.

Anyone checked Tripp's mom's blog??
H.F. (yes an abbreviated swear word)
Wow, is that ever tough to comprehend.
No, actually.  I can't comprehend the pain and suffering that boy and his caregivers are going through.  I just can't.   I don't even want to.
lalalalala
ears plugged and
head in sand....