Ashley's Story

She will leave fingerprints all over your heart

10/12/2007

Wait and See

This is our plan. Wait and see what happens. Ash has a pericardial effusion and a plural effusion. Basically as a result of the extra weight and fluid she is carrying because of her rejection treatment. As I understand it an effusion is a collection of fluid. There is a small amount in her pericardial sack and some around her left lung. Options? We are waiting to see if we can diffuse them with lasix. I won't even consider the other option of tapping into them at this point. They haven't asked to and we aren't going there. We discussed my fears and with good reason they understand why I fear those words.

The CT also showed that the ilius(stall or stationary predicament of her bowel) remains. The numetosis(?) remains as well. That is the infection or bacteria in the wall of her intestine causing much of the distention and swelling of her abdomen. We are waiting these two conditions out as well.

The scope will give me a visual to compare to what we saw a few days ago. The biopsy results will be in tomorrow to tell us if the treatment has worked.

Ash is sleeping. So hard that she snores (or more than likely is snoring because of all the extra fluids). She looks enormous. None of her clothes stretch around her. It is very sad for me to see her this way. Her eyes are squinty and slanted because her face has morphed into something very large. She continues to claw her skin until it bleeds and her hands and feet continue to peel or sluff. She looks so sad and there is nothing I can do about. She is grumpy and irritable. I miss her sweet smile, her laugh, and her twinkle.

It is such a struggle not to take this out on Dave. I am so frustrated and it shows during our conversations. He is back home working, raising kids, and running schedules. I am here waiting, sitting, soothing our baby, and feeling abandoned. I know its ridiculous, but its honest. What a distance and strain these situations can instantly place on a marraige. Thankfully we are as solid as they come and we can try and understand each other's frustrations. He is working on getting me a car so that I might be able to take care of the necessary things of life and I am working on getting friends to sit with Ash while running those errands. I am sure it will all work out, but it can get so stressful when you throw it all on top of things like effusions, infections, rejection, scopes, and biopsies. Its just everyday life and some times its hard.

More than anything it is the "wait and see" approach that has gotten to me today. I'm still learning to be good at that.

25 Comments:

At 1:37 PM , Blogger Dawn said...

My goodness you are going through SO much at once....((((HUGS))))...

Here are two quotes I have on my blog (and have to read daily I swear!)...

"Faith is deliberate confidence in the character of God whose ways you may not understand at the time".

"Faith is not a belief that everything will turn out to please us; rather it is the confidence that no matter how things turn out, God will somehow use the events in our days for His glory and for our good".
E. Stanley Jones

You have every right to be angry at this situation. It is not fair, but wow, you are reaching thousands with your honest testimony of living in the valley. Bless your precious, precious heart.

d

 
At 1:40 PM , Anonymous Anonymous said...

Trish, I can feel your sadness in your post, I wish there was something I could do to ease the pain.I will continue to pray very hard for Ashley, and her sweet family. May God put his loving arms tightly around you and bring you answers, comfort and peace.Praying Ashley's swelling goes down,you are once again able to see that beautiful smile she has.Big hugs to you both. God Bless. I'm sure Dave understands how you feel being alone, scared, and just wanting your baby well so you can go home.I pray this happens soon for you all.

 
At 2:02 PM , Blogger KM said...

Blessings to you, Trish. I just don't have any words that I think could be anywhere near what you need.

I do have prayers and petitions to the same Father that loves you and Ash. I don't always have understanding...but I always have the One to look to.

I'll keep checking in and praying as the day goes by.

 
At 2:07 PM , Blogger Paulette said...

Trish,
I can understand everything you are feeling and I am glad you are able to voice it. You are human and having to hold up under the hardest circumstance. It is not easy seeing you baby suffer day in and day out.
Do you have any family that can come and be with you?? I don't understand why you are there alone?
I can see Dave for sure having to work and be with Blake and Allie but I was wondering why no one else is there with you?
I am so glad you have friends coming by that is a Godsend. I pray getting out a bit will help you to have a little break. I could see going crazy day in and day out.
I am praying hard for Ashley, and you Trish as well of courseYou have a wonderful testimony of faith Trish, hang in there.

 
At 2:07 PM , Blogger Sunshine said...

We are praying sweet girl...Sunshine

 
At 2:32 PM , Blogger Laurie in Ca. said...

Praying for you both as you "wait and see". Thank the Lord that she is sleeping!! Also lifting all of the things to the Lord to watch over every one of them. Hoping the scope and biopsy show good results. Hold on Trish, Jesus is right there with you and hears your hearts cry. And I am sure she misses smiling, laughing and twinkling for you too. Look beyond the swelling, she is in there resting and waiting to come back. Dave sounds like the kind of husband that can take anything you need to vent. He knows how hard this is for you, I am sure. Praise God for strong marriages!!
Try to rest sweet mom, it would make you feel better too.
Love, Laurie in Ca.

 
At 2:58 PM , Anonymous Anonymous said...

Dearest Trish ~ My heart aches for you and Ashley. I honestly wish that I was there to help you out (or even just to give you a hug!).

I will continue to pray for peace and comfort as you "wait and see". How hard this must be. I don't have any words that will make any of this easier, but I want you to know you are constantly in my thoughts and prayers. I also hold Dave, Blake and Allie just as close.

Love, Jule White

 
At 3:03 PM , Anonymous Anonymous said...

Trish I try not to comment unless I feel God nudging me too but I still read every day sometimes twice. Your entire family is in my prayers right now and I am so thankful that you know God is looking after you all. Don't fell bad for feeling abandoned!!! Those of us who are at home with our families sometimes feel abandoned when schedules get hectic so you have every reason to feel lonely sometimes. It is then that you let go and let God catch you. God Bless you on this journey in your miraculous story.

Allison, NC

 
At 3:27 PM , Anonymous Anonymous said...

"God is our refuge and strength, a very present help in trouble." Psalm 46:1

We are still praying for you and your family - lean on the Lord, He will provide!

 
At 3:30 PM , Blogger Wendy said...

I don't know about you, but I always feel better if I can take some action. Waiting is the hardest part. It wears me down in ways I cannot even explain. My heart goes out to you. I am sending big hugs and many prayers your way.

 
At 3:39 PM , Anonymous Anonymous said...

Oh how I wish I could come and give you a huge ((hug)) through the computer. It makes my heart ache that you have to go through so much alone. I know Jesus will not leave or forsake you and I pray you can hang on to that. I feel your sadness and abandonment as you write. Bless your heart as you endure this. I know it is very difficult to see a child suffer and feel helpless. Know I love you and am praying and doing what I can from afar!

I love you, Trish! And Ashley!

Shari

 
At 4:14 PM , Anonymous Anonymous said...

Oh sweetheart I am so sorry. It is understandable why you take things out on your husband. He has proven to be a strong man and is able to understand and carry your frustrations. Praying for you, for peace and ease. We know the Lord is at work, even if things seem just so frustrating and we aren't seeing the results we want at this minute.

Thank you for sharing with all of us your precious, precious angel. She is beautiful and she steals my heart each time. God has been using you to teach me and so many others the true meaning of trusting in Him. We know the word says that all things work for the good of those who believe in Him....and we have definitely seen evidences of this haven't we!

I will check in again tonight. Praying for you hun!

 
At 4:36 PM , Blogger JulesSpirit said...

I pray for you, baby Ashley and your family every day! I wish for you and your precious family peace. May God hug you a little tighter on days like these.

 
At 5:04 PM , Anonymous Anonymous said...

Waiting is so so hard! Will pray it gets easier and that Ashley will start feeling better.
"May the Lord bless and keep you
May the Lord make His face shine upon you
and be gracious to you
May the Lord turn His face toward you
and give you peace."
Numbers 6:22-26

 
At 5:06 PM , Blogger Amy T said...

Praying for you. I know it's been a tough day, but praying it gets better and that the fluid dissipates and that the biopsy has great results! Praying for Dave and the kids back here in Longview. Praying it works out with the car soon and the "pickle sitters" so you can get some things taken care of. I know that will help to a degree.

 
At 5:34 PM , Anonymous Anonymous said...

Trish,

I'm so sorry you are dealing with so many uncertainties. Know that I'm praying for Ashley, you, and your family.

 
At 6:17 PM , Anonymous Anonymous said...

Oh, Trish. My heart aches for you and Ashley. It must be so difficult for you to watch every day, to wait every day..But I am praying for you as much as Ashley...I would guess that we all are. Whether you feel it or not, God is watching over you, holding your dear child in His arms and providing for needs you may not even know you have!

I believe that God is paving the way to home for you both. Sometimes, it just takes longer than we expect for God to make His blessings known.

Cry out to Him and know that He is holding your hand through every minute.

 
At 7:31 PM , Anonymous Anonymous said...

Trish, are they giving Ashley probiotics (acidophilus, etc.)to help her to have a healthy bowel?

 
At 7:59 PM , Anonymous Anonymous said...

What can I say? I feel at a loss for words. Waiting is so very hard. And you've been doing it for so long now.
I will pray for healing and movement in the direction towards home. Perhaps you need Dave to come visit (easy for us to suggest and harder for you guys to do when family is separated like this).
Praying,
Heidi

 
At 8:03 PM , Blogger The Rutland Family said...

WOW! You guys are being hit from every direction. Take heart though, God will shine through all of this. I have never met you or any member of your family, but I can tell from Georgia that you are all very strong. It is obvious that God is the head of your home and hearts. He will get you through this and I know that you will give Him all the honor and glory. You are all constantly in our thoughts and prayers. We'll check in again before we go to bed.
Because He lives we CAN face tomorrow.
In His hands,
Pam

 
At 8:48 PM , Anonymous Anonymous said...

We are praying!

 
At 8:58 PM , Blogger Keri said...

My heart is feeling heavy with your own sadness and pain. I'll be in prayer for you, Ashley, and your entire family as the Holy Spirit wakes me to pray throughout the night.

God's rest and peace for your soul tonight.

 
At 9:01 PM , Blogger Tamara said...

You poor things...I have always heard (and tend to follow this too) you hurt the ones you love because you have to have an outlet and they won't go anywhere...You can only handle so much without blowing a little steam Trish...you are amazing, Dave knows! He's pretty amazing too, he'll take it ;) Praying for sweet Ashley. She is getting kisses and love from Tennessee...HUGS AND LOVE AND PRAYERS!

 
At 9:07 PM , Blogger Sarah said...

Oh, Trish, I'm so sorry this has been such a tough week! It is hard not to take it out on your spouse during times like this. I'm in bed, unable to do anything, and my husband is having to do all my work as well as his, and it's making both of us crabby! I'm not sure which one of us will be more glad when I'm off crutches.

I'm praying for you tonight, that your frustration and loneliness will be eased, and that your marriage continues to grow stronger and stronger, despite the circumstances. Bless you for your honesty today! And of course I'm praying for Ashley!!

 
At 9:10 PM , Blogger Sarah said...

Sorry, Trish, if that last comment doesn't make sense. I'm on hydrocodone, and after reading the comment to myself, it doesn't even make sense to me!

I meant to say that I understand feeling crabby toward one's husband, and I'm praying for you :)

 

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