Tuesday, December 9, 2008

No hole for the PEG... yet

Thank you, everyone, for your BLOG comments, phone calls, and support. It is greatly appreciated. For the past four days, Shawndra has been sleeping a lot, so she hasn't read your BLOG replies. But, she will soon.

This morning a gastroenterologist was unable to place a PEG. He said that he could not see the light from the scope to make the hole. This could be for a variety of reasons, one of which is the intestine has moved in front of the stomach. A general surgeon has been consulted to perform the task instead. We should see him this evening. And since our darling, mischevious Shawndra decided to let the NG tube "fall out" yesterday (hey, who was on duty while I was gone!?... just kidding), she will continue to throw up bile until the PEG can be placed. I'm trying hard to convince her to put the tube down one more time, but she'll have none of that! Once the PEG is in, that will be her "drain" since her bowels are not letting anything through due to tumor pressure. For nutrition, a nightly bag of TPN is infused via her portacath. That's the technical side of the story...

As I write this, Shawndra is in good spirits. She's semi-awake, while Pam is washing her hair with the "shampoo cap". Also she's listening to an Enya CD. That alone will relax just about anybody. The goal is to get Shawndra home so we can finish up the Christmas decorations and enjoy the holidays. The oncologist suggested Shawndra try a different chemotherapy named Urbatux, perhaps in a few weeks. Whether she chooses to continue chemotherapy is yet to be determined.

Tonight Ella and I will have a slumber party at home together. I'm near the point of exhaustion, so the family has arranged for Dustin to stay overnight with Shawndra. I need a good 8-9 hours of sleep, then the next 3-4 days of 4-6 hours won't be a problem.

There is a time and place for serious conversations with Shawndra. In a few weeks or months, or who knows when, those conversations may take place, but for now, while she is in the hospital, fighting to come home, please, be positive, and choose your words carefully. This also goes for BLOG replies. We pray she will be able to come home soon.

I refuse to end this post without some kind of laughter. Sweetie (Shawndra), I know when you ready this, you'll laugh too. And laughter IS the best medicine...

Shawndra's parents, Carolyn and Gary, have been caring for Ella during our hospital stay. A few nights ago, between the hours of 3 & 4 in the morning, she played a manipulation game with Grandma & Papa, not wanting to go back to bed, due to monsters in the closet. Last night, Grandma resorted to putting a plastic doorknob on Ella's room so she couldn't open the door. After much screaming, Ella tired, and fell asleep. Well, this morning, Grandma stepped into the backyard to leave the dogs (yes, Lexi is on a little vacation too) out. She stepped ALL the way out, and shut the sliding glass door. Can you see where this is going? Ella proceeded to lock the sliding glass door and run off the other direction. Grandma pleaded for Ella's return, but that had zero effect! Grandma had to use the garage door keypad to let herself back in. Needless to say, Ella was in big trouble. Although Ella didn't explain her actions to Grandma, I have a feeling she was just returning the "lock out" favor she experienced the night before.... :) I love that little tinker! Daddy & Ella will have NO problems tonight at home because.... she's sleeping in the same bed as Daddy! Yeah! Sorry Grandma & Papa, but I miss her so much. She's already requested to watch Scooby Doo cartoons. Hmmm, that explains the fear of monsters. Those "meddling kids"!

- Doug
------------------------------------------------------------
I wanted to clarify what hospice means and why it was suggested. First of all, the surgeon suggested that the family start thinking ahead and maybe get the paperwork and ball rolling now, to ease the stress/hassle/work later. Hospice is seen by so many as the last few weeks/days/hours. But hospice can be the support needed for the family and care in the home for the patients in keeping pain managed and keeping them comfortable for quite some time. No decision has been made yet and no one has started any paperwork that I'm aware of. I pulled off some info from the internet to maybe clarify hospice even more.
*Hospice care is provided by a team-oriented group of specially trained professionals (including as physicians, nurses, social workers, clergy), as well as volunteers and family members.
*Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort.
*Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient's family and friends.
I hope that you all understand that we have NOT given up hope nor fight. Shawndra told me that she had not given up and I feel like I need to pass that along. We are all still in encouragement and positive mode. Please continue to pray for strength, for love, and for faith and hope. Each of us has different things that we are struggling with and each of us have our strengths. This has been such an amazing dynamic to watch my family hunker down, hold fast, lean on one another and others, and feel the amazing amount of love,faith, and support that has surrounded us. God has definitely been hard at work.
We are planning on having a nice Christmas with Shawndra at home!! Pray that Shawndra will be able to get out of the hospital by the end of the week.
- Andrea

53 comments:

Anonymous said...

After rubbing Shawndra's head this morning, I thought to myself "This girl is in serious need of a shampoo and a pretty hair do!" :)
I am glad Pam, with her magical hands, was able to make Shawndra look like the beautiful princess she is.
We will continue to keep the faith and we can't wait for our lovely Shawndra to come home!

Love to you all!
Brandi

Paulette said...

Oh Praise the Lord!!!! I am so thankful that there are different suggestions for Hospice, I had never given up my healing prayers for Shawndra!! She is such a fighter and I know we can get through this little road block, Thanks so much for this more positive update Doug!!
Blessings and I am praying.

Anonymous said...

Doug,
Thank you for the update and have fun with little Ellas tonight. Keep her warm and toasty!
Shawndra,
Stay positive and keep that attitude in check. You are a fighter and an inspiration to us all. Get better and I will see you when you come home.
Lots lo Love,
Miki

Anonymous said...

Doug,
Thank you for the update and have fun with little Ellas tonight. Keep her warm and toasty!
Shawndra,
Stay positive and keep that attitude in check. You are a fighter and an inspiration to us all. Get better and I will see you when you come home.
Lots lo Love,
Miki

Anonymous said...

Hope you are all able to be home soon and enjoy the holidays. Hope that the procedure goes well the next go round. Our thoughts and prayers are with you.

The McRaes

Anonymous said...

Thank you Doug for your explaination!
Say hi to Shawndra for me. And, I hope that little Ella lets you sleep tonight! heehee

BTW-our very fist grandchild will be born in March and guess what her name will be?? Yup, Ella!

Sue

Anonymous said...

Doug: thanks for sharing that story about Ella! I was thinking, "no way this little girl locked her grandma out of the house...", but sure enough, she did. There is definitely mischief behind that sweet little face of hers; dare I say Shawndra's eyes sparkle with mischief, as well?

We are cheering for you all from our little corner of California, and are cheered by this wonderful post. We will pray that Shawndra spends Christmas at home, and we will pray for you as we always do.

Still laughing at Ella's michief,

jg in ca

Anonymous said...

She didn't want to wait for me for another shampoo?! ;) I look forward to seeing Shawndra tonight. I'm wondering if I'm going to get a better night's sleep than you!
Enjoy your night with sweet Ella and I will do my best to take good care of Shawndra while you are gone.

Sleep well,
Dustin

Anonymous said...

Thanks for the update Doug. I've know Shawndra since 4th grade and it's so awesome to see that she married such a wonderful man who is taking such great care of her. She's always been a fighter! Enjoy your night with Ella, hopefully you can get some good sleep. Sending love and prayers to all!

Dana said...

Thank you so much for the update! Praying hard for you Shawndra and expecting miracles for you this Christmas!

Anonymous said...

I'm not giving up on you girl!!! No worries there, If there is anyone that can pull this off it's our Shawndra!! I don't know her personally, but what I have learned is that she is one tough cookie and I admire her so much for all her tenacity, humor and sweetmess through this whole ordeal. Of course Shawndra will be home for Christmas and will be surrounded by friends and family just as she would have it.
I love you girl! Keep up the fight.
Your faithful warrior~
Deb (LSMO)

Anonymous said...

Shawndra, Doug and Ella
You are always in my prayers and I think of you often. I know we have lost touch lately but I have been following along and pray Shawndra gets home and is feeling better soon. I wouldn't want an NG either so painful esp when inserted by a 3rd year med student doing their first one- thankfully it was the only one I have experienced but I won't be volunteering again either. Makes your throat hurt for a week- Oh the suffering Shawndra has endured she is such a fighter and I admire her strength and courage. We are keeping the faith and praying you are all home together soon. PS we have a monster problem at our house too (unless I have Aidan sleep with us).... going to make a "monster spray" (of water) and write on it & give it to him to use at night- we have tried it all. Here's hoping you all get sleep tonight. Adriane

desertskyquilts said...

If those monsters under the bed continue to be a problem, then get a spray bottle and fill it with "monster fright." Spray under the bed, in the closets, everywhere. When monsters come near it, they are shocked with such a fright that they know an even bigger monster lives here and they stay away. =)

Best of luck with that one. Prayers for your family to have Christmas together at home.

Anonymous said...

Shawndra-

I have been thinking of you all day today with snow on the ground. I know you love the snow. Our thoughts and prayers are with you always. I really enjoyed little Ella's story. She is just like her Mommy a fighter! Keep Believing! We Love You Shawndra!

The Mudge Family

Kelley said...

Doug & Andrea, without being too harsh, I am so glad to hear you address some "issues" regarding past posts. I was a bit confused about a few of them, which I am sure were not meant to be unkind, perhaps a bit unthought out.
With that said, there is NOTHING I would like better than to get that girl home to finish up holiday decor, and festivities! It will be first in my prayers. While fancy caps, hairdos and all sound um, fun?, there is no place like home.
Carolyn, what fun you must be having :) Not that you would agree, at least for that fleeting moment, but you will laugh about this.....I promise. They are all lucky kids to have such wonderful grandparents.
Doug, enjoy your sleepover, Scooby Doo, and snuggle time. Too quick those opportunities pass.
Shawndra B, do what you need to to blow that popscicle stand. I am sure some of it is less than desireable, but getting home is the goal and that sounds better then extending your stay. Peace and Love until your next update.

Amberchlopaz said...

Dear Doug and Andrea,
Thank you so much for the updates. It is wonderful to hear about Shawndra's progress. Thank you so much for keeping us posted. :-) Joyce

Anonymous said...

It is so wonderful she has such a great support system. I hope she can be home soon where you can be much more comfortable, and with her family. I hope you have a wonderful holiday...
Meghan

Anonymous said...

I will continue to pray for you and your family. I missed you on Monday and had quickly went to check your blog to see what's going on! I think about you all often.

*hugs*

Amy Sizemore (your personal fingersticker!)

Michelle said...

Thank you for the update, Doug! Shawndra has been on my mind non-stop. Sending your whole family all my love and prayers...

Michelle

Anonymous said...

Happy to hear your update. thank you for taking the time. Continuing to pray for healing and holding you in our arms.
Shawndra, you are a troper and you will be home for christmas with miss ella.
Sending hugs from Minnesota. I admire your spirit. Will be saying a special prayer so things go well with you and you can get home soon. There is no place like home.
hugs, Julie (jill's mom)

Kellista said...

Shawndra, Doug, Andrea, Greg, and family (I'd list you all but I'd be here a while). ;)

YOU GUYS ARE AMAZING!!! I've seen some tough situations in my short life and NEVER have I seen such a family surround one individual and offer up prayers, hope, support, love, time, etc. You should all count yourselves blessed to be in the family you're in and I count myself blessed to just be an outsider looking in to see what God can do with wonderful believers like you. THIS IS NOT OVER. Shawndra is a fighter (obviously) and I know she'll be home for Christmas and on the ski trip and putting Ella in time out for locking doors well into the future...haha! (Gotta watch that child, she's a fighter too..hehe). This is just another mountain you all have to climb.

Shawndra: God has not abandoned you or given up on you. Keep up your wonderful spirit, enjoy the small things in life (like friends who shampoo your hair to relaxing music...fun times) and keep reading God's word and seeking His peace.

I'll leave you with this: Matthew 6:25
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?" Enjoy today, let God handle the rest!

Lots of love,
Kellista

Anonymous said...

Shawndra,
Thinking of you and praying that you are home soon. Thank you for sharing your experience with all of us...what an inspiration you are!! Keep fighting as I know you are & know that so many people are thinking of you and in your corner fighting with you.
Doug-thanks for the funny Ella story...what a cutie she is!!!

Melody

Michele said...

Thanks for the update! I love the Ella stories. Keep them coming!

Anonymous said...

Ahh kids, you gotta love them. They are always up to something mischevious.
Shawndra, you hang in there girl. You are so tough and you will get through this. Never give up, keep fighting. There are so many people praying for you and that love you. Even though I have never met you, you mean alot to me and I wish you a quick recovery to get home and have a fabulous holiday with your family and that beautiful Ella.

Kristen

Anonymous said...

Doug - I am laughing at the post of Ella locking the door...they learn quick don't they? Tell her the little girl who used to live in the bedroom made sure there weren't any monsters!

Keep up the good fight...and the positive attitude...all you have to do is have Brandi tell you a story and you will for sure be laughing!

God Bless...this is the season for miracles...our thoughts and prayers are with you.

Allyson Ellis

Anonymous said...

This is the best update ever. Great Ella story! Shawndra, fight fight fight! I'll be lifting you up in prayer with so many others. You just do your thing...one last thought, so thankful that you obviously have the best possible support system in your husband and family. Girl, you cannot lose! You are awesome!

Anonymous said...

I've read this blog since the beginning but have never commented, however, I received an e-mail today (through work) and felt I needed to. Doug- I did not realize your mother works in the Olathe School District! I do as well and that is where I find the irony. Like I said, I found Shawndra's blog through Jennifer Ireland and have followed since day one but never really put two and two together. I work in the music therapy department and travel to your mother's school twice a week. What a small world.

I wish you and Shawndra all the best over the next few weeks and just know you have one more prayer going out to your family. Shawndra is such an inspiration- even for those who have never battled the battle she is fighting- she just gives me great strength to be a good mother.

God Bless your family-
Angela Jones

Anonymous said...

Oh my, Ella is a cutie! I've actually had a similar experience with our 4 y.o....kids keep you smiling. I'm sending this knowing that Shawndra will make it home next week to enjoy Christmas, and what a wonderful time it will be for you all! She is truly amazing and courageous. Thinking of you all, amy graver beers

Anonymous said...

SERIOUSLY... people.... Think before you speak!!!!! Shawndra needs ONLY positive thoughts and prayers right now. My thoughts and prayers are with you and your family for the strength you need at this time!!!!!
Love and prayers are sent your way!!!!!

Anonymous said...

I can't stop the tears of sorrow as I read of Shawndra's suffering. My heart aches for you too Doug as you struggle to do so much. My prayers are for BOTH of you, and ALL who help you, for strength to fight this hideous battle. Isn't it amazing that because of you there are people praying that have never prayed?? There are people who didn't know what a colonoscopy was before you courageously started on this journey who have since had one or encouraged someone else to have one!! There are people who think about you from every corner of this country and people who have found strength they didn't know they could find because YOU have shared of yourselves so deeply. Your stories about Ella and being her parents tickle us. You are so real. Somebody told me closet monsters take Tuesday nights off...sleep in peace. Gail

Anonymous said...

I can't stop the tears of sorrow as I read of Shawndra's suffering. My heart aches for you too Doug as you struggle to do so much. My prayers are for BOTH of you, and ALL who help you, for strength to fight this hideous battle. Isn't it amazing that because of you there are people praying that have never prayed?? There are people who didn't know what a colonoscopy was before you courageously started on this journey who have since had one or encouraged someone else to have one!! There are people who think about you from every corner of this country and people who have found strength they didn't know they could find because YOU have shared of yourselves so deeply. Your stories about Ella and being her parents tickle us. You are so real. Somebody told me closet monsters take Tuesday nights off...sleep in peace. Gail

Anonymous said...

I know of someone who makes Teddy Bears out of favorite articles of clothing or blankets, etc. I thought that Miss Ella might like a "Mommy Bear" with one of Shawndra's favorite clothing articles. Or even a "Daddy Bear" to be Politically correct. If this is something you are interested in just say the word and I can be in touch and get that done for Miss Ella. Hope all is well and my thoughts and prayers are with you and your family. Stay Strong Shawndra....

Astraea said...

My heart did a leap when I read the update on this post. I, along with others, took the hospice statement incorrectly. Shawndra, no matter what choices you make, I will pray and support you every second of the way. A mother's will is so strong! The Lord is our rock. He will never leave our side. You are so loved. By so many who don't even "know" you!

I'm praying for a cozy Christmas AT HOME. Maybe someone can whip up some yummy pureed Christmas cookies! ;)

Hope the slumber party was restful tonight!!!

Anonymous said...

It is amazing to me that you can "Open up" your lives to all of us during this time and share ALL of your thoughts, fears, prayers, precious family time, etc with TOTAL strangers. Shawndra,you are so courageous in that you take this battle head on and try to educate others so that they may learn from your experience. Doug, how lucky Shawndra is to be LOVED so deeply. All women yearn to be LOVED like that. Miss Ella has such loving people in her life and children learn from their environment, so she is and will continue to be WONDERFUL in her own little way. I am amazed that total strangers can be so harsh with words or advice without even knowing you or your family. I thank you from the bottom of my heart for sharing with us. Leading by example on how to be loving and caring individuals. You are BLESSED and I thank you.

Love and prayers are flowing your way!!!!!

Anonymous said...

Hello,
I've been following your story and praying for all of you.
Mary from VA

Marie said...

Oh My Word! I was so glad to see an update. I've been checking twice a day at least since last Friday. Shawndra has such a capacity for living life to the fullest and with humor. I enjoy reading about her latest doings! lol. What a wonderful family you all are.
I have a pretty big prayer list that I go thru every night before I sleep. Shawndra is on that list. Even though I don't know her in person, I know her through here. She manages to put a good spin on even the bad stuff. And she has gone through some bad stuff. Rest easy tonight - both of you and in the days to come. You are all in very good hands - HIS.
By the way, who is this lucky Dustin person??

Hugs,
Marie

Sherri P eh said...

Doug, thank you for the informative and entertaining update, and I'm so glad Shawdra will be enjoying a Merry Christmas at home. Continued love and prayers!

Don MacLeod said...

Enya has some beautiful tunes but in the hope that light hearts are easier to lift I would like to share one of my favorite alternatives.

http://www.metacafe.com/watch/907410/the_colo_rectal_surgeon_song/

Hold Fast, wishing you a smile ;-}

Don MacLeod

Anonymous said...

Shawndra,

I rarely post but I read your blog daily. You are such an inspiration and a fighter! I know you are fighting hard girl! I am praying for you as you are on my heart and mind often. I pray you will be home decorating for Christmas very soon!

Christie

Anonymous said...

BLESSED WEDNESDAY AM TO U DEAR SHAWNDRA AND FAM,
I CONTINUE TO PRAY FOR HEALING AND RECOOPERATION FOR U SO U WILL BE HOME FOR THE HOLIDAYS AHEAD....MAY THE GOOD LORD GIVE U THE STRENGTH AND COMFORT TO SHARE THOSE SPECIAL TIMES WITH YOUR DEAR FAM....LEAN ON THE LORD GIRL....U ARE OUR MIRACLE.....WITH CHRISTIAN LOVE AND FRIENDSHIP, YOUR ANGEL OF PRAYER IN KC, MO.....JEN MILLER

Terra Shover said...

Continuing to pary for your family! I pray that Shawndra will make it home soon to finish decorating for Christmas and to spend the wonderful holiday with family and friends!

Keep up the fight, your prayer warriors are!

Terra

Anonymous said...

What a beautiful gift family is....you all have such strength and I can feel the love even from the words posted on the blog.

I pray you will all have a wonderful Christmas filled with peace and love.....and lots of laughter.

Julie

Vickie Kruse said...

THANK YOU for the update!! I too have read some of the BLOG comments & thought of Shawndra reading them & it bothered me. I know people mean well but sometimes don't think before they " speak " so to say.
This is just a bump in Shawndras road & I feel bad for her & her family to have to hit another bump, but a bump is just what it is. Can't wait to hear from Shawndra again on her BLOG!! Can't wait to hear her stories about Ella & her wonderful Christmas, from this BLOG, I know she loves the holidays!!
Just get better Shawndra, we know you will. Can't wait to hear from you!! Thanks 4 the update, Doug & Andrea!! Vickie in J.C. Mo.

Vickie said...

OOPS, its Vickie Wieberg now!!! :)

Anonymous said...

Shawndra,
I wish you were awake, this morning, to hear your mom and I laughing about what all of these people in blogland must think when they read that "Dustin" is coming to stay with you...who is this other man in Shawndra's life?! ;)
Alas, dear bloggers, I'm just a girl friend of Shawndra's who has been talking her ear off for close to 30 years.
I hope all goes well today and that you will be home in no time!

Love you always, d

Kimberley said...

Keep up those good spirits Shawndra, we're thinking of you often xxxxx

Anonymous said...

Praying for your family. Stay strong and keep believing.

Nicole M

Anonymous said...

Shawndra and family,

I am a total stranger who stumbbled upon your website last night and have not stopped thinking about you since. I have you in my thoughts and prayers.

Thank you for sharing your story. I have Crohn's disease and often have many symptoms you had that signaled to you something was wrong. Reading your blog opened my eyes to not look at my disease in such passive measures. I have a ton to live for and need to always take my meds and take care of myself. Thank you from one mom to another for opening my eyes and making me realize how serious health problems are.

You are an inspiration to me and I will continue following your story as I feel you have a ton of life left and more lessons to teach. May you all have a wonderful holiday. Thank you for giving me a beautiful gift, your blog, that opened my eyes.

BTW: I have a little girl named Ella also.

Happy Holidays!

Anonymous said...

Shawndra,

I hope you are having a restful evening. Please know that you continue to be in my daily thoughts and prayers. I am continuing to pray for complete healing and praying you get to go home soon!

Jennifer Teegarden

Anonymous said...

I loved the story or Carolyn being locked out! Made me laugh out loud!
Praying for you all and keep on, keeping on!
Our love to each one of you...
Marilyn & Jim

Angie said...

When Carolyn told me that story I totally pictured it...And the sleepless night of getting in and out of bed two nights before...must be the red hair...hehe.
Love ya-
Ang

Anonymous said...

Thanks, Doug. I hope you get some rest and don't get "locked in" somewhere. That Ella is a character! Still praying for you and Shawndra. You are a great couple.

Love, Marny

Anonymous said...

I am praying for you! Keep fighting!