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??