Monday, October 5, 2009

Vesicostomy....

if you know anything or anybody who has experience with this could you please let me know...That is what sweet Annabel needs. She can't seem to stay well and is staying almost infected the entire time now. She has lost a pound in the last week and not wanting to eat. Nights are long as she is not comfortable. There is also possibly something going on around her surgery site that is causing much distention and she is in pain from this. She doesn't cry out with noise but today she just lay there on her quilt with tears rolling out the sides of her eyes.

19 comments:

Laurie in Ca. said...

I will be in prayer for Annabel and this condition that won't let her heal Cathy. I am so sorry she has to suffer in silence with tears streaming down her face. It breaks my heart for her. Praying for answers for you all. I love you.

Love and Hugs, Laurie

Hilary said...

Poor sweetheart!!! I'll be praying for her and you too!!!

Tamara said...

Cathy I am sure you have already Googled this, but I did anyway and found this. Here is the weblink:

http://www.aboutkidshealth.ca/HealthAZ/Vesicostomy.aspx?articleID=10282&categoryID=

If this does not pull up just go to aboutkidshealth.

I am SO sorry that she is suffering! Oh this breaks my heart knowing that these precious little tears are just falling. Oh your heart... I know I always say this, but I do mean it that I wish I were closer to you so we could at least be together during these tough times.

Little Miss, I love you so and Abby does too! We want you to get better soon sweet girl, we miss that smile, please know we will praying for you!!!

I have bible study today Cathy at my home and will share so we can all be praying for Annabel this week! I love you Cathy, stay strong, remember God has His reasons, take refuge in Him!

"Deep in unfathomable mines
of never-failing skill
He treasures up his bright designs
and works His sovereign will.

Judge not the Lord by feeble sense,
But trust Him for His grace;
Behind a frowning providence
He hides a smiling face.

His purposes will ripen fast,
Unfolding every hour;
the bud may have a bitter taste,
But sweet will be the flower.

Blind unbelief is sure to err,
And scan His work in vain:
God is His own interpreter,
An He will make it plain."

~ David Brainerd
Vesicostomy
What is a vesicostomy?
A vesicostomy (say: vess-i-COSS-tom-ee) is an operation that makes an opening from the bladder to the outside of your child's body. This opening is in the abdomen (belly), just below the navel (belly button).

Vesicostomy
A vesicostomy is an operation that makes an opening from the bladder to the abdomen just below the belly button. This opening lets urine drain from the bladder.
The opening lets urine drain out and prevents urine from being trapped inside the bladder. If urine is trapped in the bladder, it can back up to the kidneys and cause damage. Trapped urine may also cause infections.

Vesicostomies are usually performed on babies and very young children. A vesicostomy is usually temporary. Later, your child's doctor will decide on a more permanent solution to drain urine from your child's bladder.

The surgery takes about 1 hour
After the surgery, your child will spend 1 or 2 hours in the hospital’s recovery room. After that, your child will return to the hospital’s Urology Unit.

A child will usually stay in hospital for 2 or 3 days after surgery.

Managing your child’s pain
At first, your child will receive pain medication, usually morphine, through an intravenous (IV) line. As your child recovers, he will take acetaminophen (Tylenol) or codeine by mouth to manage the pain. By the time your child goes home, he should not need pain medication any more.

After the operation
Your child will have an intravenous line (IV). An IV is a thin tube that lets us give liquids and medicines directly into your child's veins. Your child will have the IV in place until he is drinking well.

Your child may have a small amount of bleeding at the place where the cut was made.

Dilating the stoma
The opening on your child's belly is called the stoma. It usually needs to be dilated (stretched) each day, sometimes several times a day. The dilation stretches the skin around the stoma. This makes sure that it stays open enough for urine to drain out. Dilations are done with a catheter.

Your child's nurse will teach you how to do these dilations. Your doctor will let you know how often they need to be done at home and for how long.

Your child’s skin
You will need to pay special attention to the condition of your child's skin after surgery. The nurse will show you how to diaper your child. This will make sure the urine is absorbed and your child's clothing is protected. Once you are home, your child can have a bath as usual.

Tamara said...
This comment has been removed by the author.
chadandnikki said...

Praying for your sweet girl!! Hope ya'll get some relief very soon.

The VW's said...

Poor sweet girl! I'll be praying! HUGS!!!

Kathy said...

Oh Cathy! I am so sad and sorry to hear about your precious girl! I cannot imagine how hard that is on you.

Am praying!!! For Divine wisdom for all treating and making decisions for Princess Annabel, and total relief so she can be comfortable and back to her joyful self!

Also praying for a mom who has walked this with their child to share your concerns with. Keep us posted. Love you girls!!!

Mrs Redboots (Annabel Smyth) said...

Poor little girl - I'm so sorry she's not feeling very well just now. I can't bear the thought of her lovely smile not being there for you.

Lifting her up to the Throne of Grace as I type this.

Anonymous said...

Cathy,

I'm so sorry to hear she's not well and that she is suffering. My heart is breaking and tears burn my eyes as I type this just knowing that her tears are falling. How I wish I could take the struggles from all our sweet babies. I'll never understand. Never. Please let me know if I can do anything for you or your sweet girl. Anything at all. Loving you girls from right here in Texas. Trish and Ashley

Anonymous said...

This image breaks my heart, tell her I love her and miss her.
Edie

Jessica mommy to Alex/ RTS said...

Im so sorry it has been so long since I have checked in on you. This just breaks my heart. Thinking of you Cathy, and sweet Annabel.

Jill Smith said...

It makes me so sad to hear that Annabel is in pain. She is such a trooper, though, and my heart goes out to her. My prayers go out for you and little Annabel.
Love, Jill

Anonymous said...

I found this link from a mom with diapering advise. Looked pretty helpful with regular mom tips...http://www.kidneyreflux.info/blog/2009/04/diapering-vesicostomy.html

Good luck! This might make Annabel feel way better in the long run.

Ali Rae said...

http://www.homeschoolblogger.com/HouseFullofJoy/page1/&thisy=&thism=&thisd=

This lovely young lady recently had it done.

Anonymous said...

The silent tears have done me in. I find myself having lots of questions for God lately, and sick babies are at the top of my list. Please let me know what we can do to help! We love all of you! Lisa

ANewKindOfPerfect said...

As you know we did the Mitfrofanoff, but feel free to ask me questions. I talked a LOT to our doctor about it! My concern with the vesicostomy was skin breakdown from constantly being wet.

I hope you find someone with a vesicostomy to talk with!

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...

hi, my daughter is 2 years old has spina bifida.. and bladder problems she is going to have a vesicostomy... i really don't know what to expect.. i will like for you to email me..god bless you and you family!
alma solis
almasolis21@yahoo.com

Anonymous said...

My baby girl was born Aug 2010 and had to have a vesicostomy within the first two weeks of life. They say she should have it until she is around 2 and needs to be potty trained. She had to have it redone around a month old because her bladder prolapsed (externalized) twice and she got a horrible infection. With the vesicostomy in its new place (closer to belly button) she is doing much better and we have not had any further problems since then and she is now 3 and 1/2 months old.