Ashley's Story

She will leave fingerprints all over your heart

9/28/2007

Reminders

We will be having another scope of Ashley's bowel done this afternoon. Still trying to determine if, when, and to what degree the bowel has been affected by this "illness"(rejection/virus). No one really knows what has happened or what is going on. The important thing to me is that everyone is trying to figure it out. Ashley continues to show signs and symptoms of rejection of the small intestine. Things like high stool output (1700cc's or more in a 24 hour period) this is an indication of rejection as well as sluffing off of mucosa and tissue that was seen in her ostomy bag this morning. Obviously these things concern me and cause me to be a little frightened about the course of action that will be taken(including the prescribing of difficult drugs for Ashley). She no longer has fever, nausea, vomiting, episodes of rash or other indications of viral infection. She does have a nasty cough and is receiving CPT from respiratory therapy to help her with that. Although she is still struggling I am reminded of those things that have been resolved for now and I am thankful.

As her mommy of course I am emotional. Of course I struggle with things that are done to or for her. I want the best possible life for her. Of course I have questions and would like explanations. I think that any parent would feel the same way in this situation. This is not an easy path to walk. It is difficult at times, but it is also blessed. Even though I may struggle and disagree it does not mean that I have forgotten all the blessings that have been scattered across this path. I do believe we are in the right place for Ashley, but I also believe that a responsible parent would do everything in their power to be informed and to understand the course in which her recovery will go. It does not mean that because I question decisions made that I dislike our team of professionals. What it does mean is that we will talk it out, work on it, and come to an agreement of some type. Although it is not always easy to get to that point, we will work together for the best interest of Ashley Kate.


To be away from home again and to return to the very same room where we fought through so many uncertain days and nights is tough. I won't pretend that it is not. If that offends anyone out there reading this journal than I apologize, but I would remind you that no one is forcing you to read along. You of course are welcome, but if at some point you decide you don't want to be here anymore you certainly have that right and I would do nothing but thank you for your time and prayers spent here. I just get the feeling that some of our readers are very hostile towards me or us or our family and I thought those of you who are should know that we realize you disagree with our decisions, our emotions, and our life style.

On the other hand I am reminded that after a long night of struggling and searching that God is still with me while I am in Omaha and He knows all about each and every difficult day. Ashley and I are here for now and He knows exactly where we are. I can be assured that He is not scratching His head wondering what to do next. He knows what today and tomorrow hold for our family and for our daughter.

Again I am reminded of how many people love and pray for our daughter daily and it humbles me. You are more than loved and appreciated. Thank you again for choosing to be here today. I will let you know if I find out anything more about the rejection of her bowel. For now we continue to wait and pray. God bless you my friends. Trish

23 Comments:

At 11:43 AM , Anonymous Dee Dee in NC said...

Sounds like you are doing great! Praying for wisdom for you and the doctors. It must be very hard after what you have seen of this medicine's effect on Ashley in the past, and you have every right to tactfully tell them that and see what they say. Did you speak with them about it?

 
At 11:45 AM , Blogger Krista said...

You are doing great and you have the right to struggle and be emotional ! Dont let anyone tell you any different. Most of us moms in your shoes could not have made it this far.

 
At 11:45 AM , Blogger Sun said...

AMEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I will pray for today's procedure and am behind you 100%! We have been called to pray for you - we who read get a VERY tiny glimpse of you and your precious family - we do not walk day in and day out with you and most of us have not gone through anything close to what you have. You are a precious mommy and I am SOOOOOOOOOOO THANKFUL that you allow us to pray for you and read about this amazing journey that you are on! Sunshine

 
At 11:50 AM , Anonymous Anonymous said...

Hey Trish,

It breaks my heart to think about all the real emotions you are dealing with. We all care about Ash, and you. Many who have written know the loneliness of hospital corridors late at night, and the frustration of doctors and nurses (most often kind hearted and compassionate) who don't LOVE your kid the way you do. You are doing a great job of thinking about everything. Years ago, parents did not have to tools to actually help with the care process. Due to your (and Dave's) innate intelligence and the internet, you can be so much more effective. Always do what you know you need to do. You have our support, and our very best wishes. One last thing -- I am ALWAYS impressed by the fact that in every picture, Ashley is not warmed and swaddled by hospital blankets. She has soft, familiar ones from home. From that, I know you want every element of her to be safe and loved. From what I see, she is.

M

 
At 11:51 AM , Anonymous Anonymous said...

Praying with all of my heart for some good news today!!
You are an amazing mom!! Thank you so much for being real with us, for opening your life and heart to us!! I am soooo thankful for you!!

Praying for sweet Ashley and your entire family constantly!!

HUGS!!!
Lisa

 
At 11:55 AM , Anonymous lori said...

Sending prayers and hugs to you today! Thank you for keeping us posted.

Blessings,
Lori

 
At 11:57 AM , Blogger cindy/barron said...

Trish you were chosen to be the little pickles mom because GOD knew you would stand up for what was right in the course of Ashleys treatment i commend you on everything you do. Iagree with Krista most of us moms would not make it this far, I pray every day to have the faith that you have.You do an excellent job with this baby girl, and with Ali and Blake.LOTS OF LOVE FROM YOUR SIS IN CHRIST CINDY

 
At 12:00 PM , Anonymous terri said...

I am so sorry that this has happened to not only Ashley but your entire family. Please know that tonight we will be thinking of all of you at Relay For Life here in Longview. We hope that she is home soon and perhaps she can be our honorary next year!
Terri Worley
Longview

 
At 12:10 PM , Anonymous Anonymous said...

I think that you are a wonderful mother doing an amazing job. I am thankful for the chance to pray for Ashley and your family. I don't comment to often, I am usually at a loss for words. I do hope that knowing that you have many dedicated readers praying for Ashley and you gives you comfort, even when the comments don't. Just know that many of us check on you and Ashley many times a day and pray without leaving a comment.
I will continue to pray for your strength and wisdom and Ashley's recovery.
Beth

 
At 12:19 PM , Anonymous Anonymous said...

Thanks so much for the Ashley updates! Keep fighting for your girl! You are her mommy and must fight when others won't or don't. We are praying! You are running the race & God will bless & reward you in ways that you can't imagine.
Brandi in PA

 
At 12:25 PM , Blogger jtcosby said...

You are amazing Trish! You are doing things the way I pray I would if I were in your shoes. You are so loved by our family...My husband even asks about Ashley now ;)

 
At 12:27 PM , Blogger oh amanda said...

I'm still praying! God has gone before you. He knows the end of the story. He's just guiding you thru it when you lean on Him. I'm praying for miracles!

 
At 12:39 PM , Anonymous Jule White said...

Dearest Trish ~ I am holding you close to my heart. God hand picked you, Dave and the rest of your family just for Ashley! She is so very lucky!

Thank you for allowing us into your heart and for being so honest. We love you and we love Ashley. Praying for wisdom for you and for the doctors. Praying for comfort and rest for Ashley.

Love, Jule White

 
At 12:54 PM , Blogger Sarah's In the Midst of It said...

Trish, you are constantly on my heart lately--good for you for being strong in the midst of dissenting opinions! You are her mother, and not one of us has walked in your shoes even for one second. Children in Ashley's situation (and all children, for that matter!) need a strong parent advocate who will stand her ground and fight for her children's best interests. I am glad to see you so strong!

Thank you for continuing to write our your thoughts--you continue to bless me and make me think, and although all I can offer you is much prayer support, someday I'm going to thank you in person. God bless you in a mighty way today, Trish!

 
At 12:59 PM , Anonymous Anonymous said...

Trish-

I think struggling emotionally right now as well as other ways is to be expected, sweetie. I certainly could never judge you for that. And to question the docs, I think is normal at times. Don't feel bad about that. I am sorry you got some comments that weren't too nice. Cowards do hide behind anonymous.

Remember, you are doing a great job advocating for your child. I know you love her so much and want the best outcome.

I am praying that the Docs will listen, that you find peace and comfort knowing the Lord is holding you tight. May he give you the peace you need to rest some today.

I love you, dear girl!

Shari

 
At 1:30 PM , Blogger Gretchen said...

My hope is that our prayers would help sustain you in this difficult time. I also hope that anything that is not helpful to you and your family would blow away in the wind like the chaff from the wheat.

Blessings.

 
At 1:32 PM , Blogger Carey said...

Praying the new scope gives you some answers.
I too stand behind you and your family 100%. You are your daughters support, and she needs you to fight for her. Keep going!

 
At 1:46 PM , Anonymous heidi said...

You are doing great, we're hear to remind you of that. God sent her to you. You are strong. You are a blessing.
Bless you.

 
At 2:08 PM , Blogger Kristi said...

Be of sober spirit, be on the alert. Your adversary, the devil, prowls around like a roaring lion, seeking someone to devour. 1 Peter 5:8

You are such a faithful servant! Satan has attacked you from other angles and you stand firm, he is just changing the game plan. Spend your time absorbing Gods love and your precious daughter and don't give the people that do his work another thought.

You are feeling the same feelings that any mother in your situation would and you are handling them in a way that only a few could. You are strong in the Father, strong in faith and you have a voice. Don't let anyone tell you differently.

I am praying for you guys!!

 
At 2:16 PM , Anonymous Molly said...

Praying for all of you!
Molly

 
At 2:38 PM , Anonymous Anonymous said...

I have not commented before but have been following your journal for quite some time. You and your family have gone through so much and I truly admire you for how you have handled all the difficulties that you have had to deal with. You have every right to be emotional as you go through this. I think you are a wonderful mother and keep doing what you're doing! I am praying for you all.

 
At 3:01 PM , Blogger Robyn said...

Continuing to pray....

By the way, you are doing such a great job under extraordinarily difficult circumstances. I'm amazed that even at such hard times you're available for His ministry (and thats what I believe this blog is/does)...and any of His warriors will come under attack. Another thing I'm praying about...

 
At 10:57 PM , Anonymous Anonymous said...

Praying for you two and your loved ones back home. This is so difficult for you being away from home and how your heart must hurt and miss your other children. I pray that God in a supernatural way will fill you with peace. That God will bless your dh and kids back home and make the separation less hard. I feel so sad for you at the possibility of a lengthy stay and all the uncertainty. Ashley seemed like she was thriving and looking better every day. I know though that our God is in control. He lead you back to that hospital for some reason...I am mourning with you as a mom and don't want to see Ashley have to go through any more procedures then she has to. I want you to have her back at home and out of that bed!! I want that so much for you guys. I know that staying by yourself is draining also..Prayers for angels, sleep (alittle), clarity of her condition, healing and discernment and most of all that Ashley will be comfortable. Colleen in Ohio

 

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