Monday, May 14, 2012

The dialatation is done

Raquel is OK.
Her operation went very well and the Doctors that performed the procedure were great and listened and read the literature I supplied.  I guess they had their own too.  haha..
She's been suffering a swollen throat since.
I suggested to the team through some advice from Casey's mom Beth that they give her some steroids to prevent this.
The GI Guy agreed it would be a good idea and had some on board before the operation.  Except that was Friday 9 ish.  I left the hospital to work around noon, Renata took Raquel home at 4 but I guess didn't push to follow up that part of the plan for her continued health over the weekend.

If it wasn't for Advil I'm not sure how last night would have gone.  She basically had a mouth full of saliva every 3-5 minutes.  She walked around with her mouth seeping at the edges till she'd open up for either a comment or demand and long viscus drips and blobs would spew out and then she'd be on her merry way, containing the next blob for another area of our floor, couch, shirt etc.

Right, we had some vomiting last night mixed with some dark brownish blood after her last two feeds.  Then some brighter fresher colours later.  It was fun all round basically.

Ren pulled the night shift on the couch watching over her, listening to nearly every breath I suppose.  She looks ragged, but lucky for her Raquel's nurse is here and she can rest some, while I've pulled a disappearing act.

Ren had a moment last night shortly after Raquel had fallen asleep with heavy sobs and tears.  I couldn't bring myself to sooth her as the darkness had already settled deep into my mood.  My sense of remorse couldn't be woken despite the fact I had shortly before that - out of the blue - scolded her for mentioning to our friends earlier that morning (on Mother's Day) that she doesn't want to recognize Raquel's birthday as it was when she was born.  She went on to say she's happier to recognize the day before when everything was still perfect and we were all EB free. 

Renata still feels that was the saddest day of her life. 
I was mad and still think it was one of my proudest - with a few immediate glitches of course, but nothing to do with whom Raquel is. 

If only the world's atmosphere was filled with amniotic fluid.

I understand her honesty, but I don't understand saying it aloud and how FKing shocking it must sound to people, especially the other new couple along for brunch who had just met us moments before.

Of course I have my way of shocking people with other aspects of Raquel's existence, but for all together different reasons.  Love it, hate it, I have my odd reasons that contain thick levels of morbid humour and passive-aggressive disdain for beating around the bush, which usually jumps quickly to the horrors of reality that cut at the edges of hope. 

I can't stand saying it's not curable.  So mind as well beat that into the person asking the questions before they get to 'Is it curable?'.  It's truly a knife to my heart every time I hear it or say it.  So I'd rather prop up the angry darkness inside before I come to it's inevitable end comment.

I guess Ren was just being honest, we clearly have our ways of explaining our sadness.  Interesting enough, we both probably have only a few more months of speaking our minds in public before it's an absolute NO NO with Raquel's burgeoning comprehension.  Although I guess Cordelia must have heard at one point and of course Coco can read and now has a IPAD to keep tabs should she wish.

Which reminds me - thank-you all who donated to the Raquel fund.  We bought it as a tool for Raquel and Coco to take their minds off whatever difficult moment we're in. As well if you'd see Raquel slide her bare finger across the screen shooting birds or bowling and clapping when she gets it right you'd see it's worth already.  Among other moments.

Anyway, Ren and I have been genuinely concerned for Raquel's immediate future in this conscious world we live in and it's not been hoots and hollers - giggles and fits for a good month now.  Raquel has peeked through on many occasions and been her goofy self and been charging around like any nearly 2 year old would. 

Problem is when I see her going hard, I'm quickly overcome with anxiety.  I watch and wonder when is she going to trip on this or that and skin her entire face, knee (again) or will all that running and walking push of what is the remaining layers of good skin on her feet?
Which was the case at our wonderful Mother's day brunch at our friends house.  I didn't actually recover from that darkened mood for hours afterward and basically did my best to avoid Raquel, Renata and Cordelia for the following 5 or so hours pretending I was actually doing yard work.  I was cracking at my seams as I was attempting a good face while I urged Ren and Cordelia to go home.

I need a freaking EB break!!
I admit, Ren needs one more!!  So any of her friends reading this.  Call her.  Take her to Victoria, Seattle or wherever for a night or (GASP) TWO - she needs a recharge badly.

I had my typical little 5am catching (not fishing) since. I was able to bring home (finally) a nice three family Coho (salmon) for Mother's day dinner.

Ren had a few moments with Cordelko, but that's only minor self sufficiency.
Oh yeah.  Cordelko.  She's been pushed aside this little while and is showing subtle signs of being largely ignored.  If it wasn't for our extended friends and family we'd for sure be having a problem on that front too.

My mom.  She rules.   Without her glue, we'd be totally lost.

Top 2 mom's ever.
Only because who she thinks is the best mom gets the top spot, who I'm pretty sure is my dad's mom, based on our recent conversation on great role models.


  1. Hi Ryan,

    You don't know me but I've been following your blog since I learned about EB (primarily through the media coverage of Tripp Roth). Your children are adorable, as is your wife, and I enjoy your great sense of humor even in the face of what are very difficult and often painful circumstances. Your silence for over a week now has me worried about you and your family. Hopefully you will check in again soon. More people than you know are cheering you and your family on.

  2. don't know me either..but I second the above comment. Many many folks read your blog and rejoice with you and cry with you. You, Renata, Cordelia and Raquel are amazing. I too appreciate your honesty and your sense of humour