Monday, December 26, 2011

Merry Christmas

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

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

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

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


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

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

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

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

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

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