family pic

family pic

Tuesday, September 2, 2008

sweetest angel

Every night about eight o'clock
I wind the stem of my little clock
And when I look in the crystal glass
I see a lot of faces pass
Of those I knew
And those I know
And you now coming
And you to go

Here's a word I'd like to whisper
And I'd like to have you listen

All this world is made of love
You are fresh from heaven above
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel

When I hold you by your hand
I'm in my happy promised land
When I kiss you in the dark
I'm just happy as a lark
So let me come as close as I can
And lay me down beside you

Here's a word I'd like to whisper
And I'd like to have you listen

All this world is made of love
You are fresh from heaven above
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel

So let me come as close as I can
Let me bring my scattered pages
Let me lay down here beside you
Tonight, and I will whisper

All this world is made of love
You are fresh from heaven above
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel in this world
You're the sweetest angel

as written and sung by Jonatha Brooke

this song was on my mind most of the day. words dont express the emotions of the steps forward we are taking, the ones that are fearful and unknown, the ones that require new commitments as old ones get left behind.

today saylor had a cystogram to find out how much her new bladder can hold right now and mostly to see if it was leaking anywhere or refluxing into her kidneys. no reflux, no leaking! good things. she is only holding about 75cc max and thats only 15cc more than she was preop. my initial feelings were ... "that wasnt worth it for just 15cc and what happened to the other 175 cc of space he said he put in there?" well it takes some time and her capacity will grow we hope. but for now its still pretty minimal. dr wallis was very pleased with the results and images from the cystogram. he removed the mit cath that was sutchered in and oh wowie did it stink! he cap locked the super pubic tube (not what i was expecting) so this means no more pet pee bag! but its there for emergency reasons and while we all adjust to cathing (its even already been used) ... which brings me to ... i thought this would be the easy part. i think all 3 of us are emotionally, physically, & spiritually exhausted as we embark on this new cathing mit program. so far she is not liking it at all and its a fight every two hours which makes it more like every hour from start to finish and its really quiet sad and taxing, takes us all to a place we dont want to be.

we go back in one week (if we are ready, its kind of up to us when) to have the super pubic tube taken out.

Dr wallis reitterated how important it is to keep her bladder safe and cathed, drained etc... that patients have died from ruptured bladders and just how intense this can be for the rest of her life. how kids have had full bladders and instead of cathing they went sledding, hit a bump and gone, done returned to heavenly father.

pressure is on. then to finish our night a most beautiful gift arrived at our door .... more tomorrow! for tonight i just want to lay next to my baby and whisper ... you are the sweetest angel!

1 comment:

Tiff said...

Cathing is such a pain but then you add the pressure of "Saylor's bladder could rupture if you don't do it in time" stresses me out! I can't imagine the adjustment this has been for Saylor and your family. I only have to Cath Ethan every 3 hours and I complain. You are one strong individual Audrey. What will you do at night? Do a foley cath or something? I don't totally understand this surgical procedure but it sounds very very complicated. You will be more knowledgeable in this area than most nurses after this experience is all said and done! Hang in there.