Ashley's Story

She will leave fingerprints all over your heart

7/09/2007

Waivering

Tonight Ash made one of the biggest messes of her life. It was SO frightening! She was shiny clean and smelling delicious after her bath when I put on her purple p.j.s and "tucked" her into her crib in our room. Dave and Blake were watching the home run derby in our room when all of a sudden Blake came running out of our room. His face was very, very pale and I thought he was going to be sick. Then out came Dave with our gherkin in tow. He wasn't carrying her in the normal cuddly was he usually does and I immediately knew something was wrong. He had picked up the corners of her blankets and she was kind of laying inside of them, but he was being very careful not to touch her. As they got closer I saw that she was COVERED in bright, red blood. For a brief moment I felt fear and panic as I tried to process what I was seeing and then I just went into action. Towels on the floor, wash cloths and ostomy supplies quickly followed. As Dave worked to clean the blood off of her face and hands I asked, "Have you even looked at the bowel yet?" "NO", he replied. Her purple jammies were no longer purple. They had turned a crimson red. "How in the world could she do so much damage in such a short amount of time?" I wondered out loud. I promise it had not even been 20 minutes since her bath. No more time for questions as we worked on cleaning up our Ashley together. Once the bowel was exposed we examined it and couldn't figure out exactly where all the blood had come from. She obviously had been tearing into her ostomy bag, but we couldn't find any obvious damage. I have been watching it making sure that it hasn't turned dusky or pale. It seems to be functioning fine, but I think I will probably be up all night looking at it just in case. After we cleaned her up I went to check on Blake and assure him that she was ok. He told me he just couldn't stay in there while all that was happening. He worries too much about her. Once he knew she was all cleaned up he came out to check on her and place kisses on those puffy cheeks.

So now what? I thought we had decided to wait on her next operation(the one that would reconnect her exposed loop of bowel), but what are we to do? I have been wavering back and forth for over two hours. I have reasons for wanting to wait. Good ones I thought, until tonight. As I go through my mental lists of reasons why I would like to wait I wonder if I am just being selfish. If her operation is to be done the latest it would be scheduled is September(in order to avoid the flu season. They really don't like the transplant kids to be exposed to all of those bugs during the fall and winter months). If it is done in September I will definitely be gone for Blake's birthday. That would make 2 years in a row. The kids will have to settle into their new classrooms and adjust to their new teachers and responsibilities without me again. That was very, very hard on them. There is a very good chance that Ash and I could still be in Omaha during the holidays. That would make the 3rd year in a row of celebrating Christmas in the hospital. Then there is my most selfish reason of all. I want more time. More time with her. I am not emotionally ready to walk this uncertain path again. It really terrifies me.

What is better for Ashley? I have no idea. The ostomy is a pain for her. It also causes her pain when the skin around the bowel breaks down. She tugs and pulls at it trying to get it off. I have a good suspicion that is what happened tonight. You can't see the broken down areas of skin unless the bag and wafer are off. I checked to make sure it was clean and secure during her bath tonight, but obviously I couldn't see the raw areas of skin that got to her just a few moments later. Would it be easier for her if we had the take down surgery now in order to make her more comfortable? I am afraid that the older she gets the more episodes we will have like tonights.

The transplant coordinator told me that its usually the parents that are in a hurry to get it done. They want it over with and behind them. Until tonight's events I didn't really understand that. The coordinator said they were fine with waiting until next summer if we wanted. We all kind of thought it would be nice to give Ash a little time to just be Ash without surgeries, chemo, and all the other setbacks. We would like to just allow her to be a little girl for a while. Now I don't know what to do. I'm not feeling peace about either decision. I think we decided it will have to addressed and discussed again next week at our check up.


So I am wavering back and forth. My heart is heavy tonight with such a large decision looming before us. If we decide to go ahead with it this year we would only have a few more weeks here at home. The thought of that makes me sick to my stomach. The knowledge of the surgical complications and risks of infection associated with this surgery don't help my upset stomach. I am really hoping for a clear sign from God that allows me to know that what is decided is inside His will for our lives. Tonight I don't see any signs.

15 Comments:

At 12:37 AM , Anonymous Anonymous said...

We're praying for you. For wisdom. That God will help you know what decision to make. And not only that but that He would give you the spirit of peace. I can tell that you are feeling very unsettled over the whole thing. And who can blame you? And don't feel bad for feeling selfish for wanting more time and for wanting your baby to have time just being Ash. That's perfectly understandable. Get some sleep tonight Trish. If you can:)

 
At 1:00 AM , Anonymous Janiece Baldwin said...

Dear Trish,
I pray for you and Dave as you consider what is really best for little Ashley concerning the surgery. I also pray for you, Dave, Blake and Allie as your family must face a time of seperation again at some point. I pray that God will give you wisdom and courage as you seek to hear from Him. I pray that you will come to the place where you can feel His peace and grace and that His Mighty Hand will guide you. I pray that Blake and Allie will be able to "adjust" whenever the time comes. That God will prepare their hearts for these situations.
I, too, am thankful that you were able to take care of this "emergency" and were able to get everything under control. I know it had to be very devasting~~~~and poor Blake. What a really special big brother he is to Ashley and Allie.
I pray now that you can manage to get some rest tonight and that morning light will lighten up your day. Love to all of you, Janiece

 
At 6:36 AM , Anonymous Anonymous said...

Praying for you. I am so so sorry that you are again faced with all these tough questions: and again I am reminded of what a great and merciful God we serve, and again I rejoice that dear Ashley has such truly wonderful parents.
God Keep.
And I'll continue praying.

 
At 7:09 AM , Anonymous Anonymous said...

If I walked in your shoes there would be no sleep tonight. I would be pleading with God to show me what to do. I want to help bear your burden Trish. Helping to lift a part of the load on your families behalf. I will be praying for you at every thought today. Praying that God will send you a "dove" either way. Praying that God will give you peace about the right decision. Praying that He will carry you in His arms and that you can sleep even in the midst of all of this turmoil in your mind. Comforter, Great Physician, You are our God, You are loving and faithful and our shelter. You go before us and make the path straight. Bless baby Ashley and her family Jesus. We are thanking you for victory and for clear direction. Amen! Colleen

 
At 7:47 AM , Anonymous oh amanda said...

Praying for clarity!

 
At 8:35 AM , Anonymous Suzanne said...

Deciding on what is best for our children ....& weighing the risks versus circumstances is never easy. We have a surgery coming up to....for Josh. I know the circumstances are different but there are fears...& worries just the same. We want to do what is best for all our children...

Praying for God to give you the answer you need to proceed.
For God to give you & I ....comfort.....to take away the worry.....& for HIS plan to be evident as we pray.

Phillipians 4

 
At 8:35 AM , Anonymous Anonymous said...

We are praying for your family. I pray that God would give you and Dave wisdom and guidance in making this very difficult decision. I pray for peace in your home. My heart breaks for you that you have to make this decision at all, but I'm so thankful that you have the Father, Son and Holy Spirit to lean on. May God bless you all!
Praying in Omaha,
Shannon

1 Peter 5:7 Cast all your anxiety on him because he cares for you.

 
At 10:06 AM , Blogger Fiffer said...

I will be praying for you & Dave and the kids. Can't imagine what you all are going through. I'm not even sure what to say other than I have grown to love that little girl of yours, and your precious two older children as well. You & Dave are incredible parents and so I will join you in prayer that God reveals himself to you. My love & prayers, Martha

 
At 10:16 AM , Blogger Sun said...

Oh Trish - we are praying too! Bless your all's hearts - may God comfort your hearts, direct your paths, and show Himself to you through this journey. May you be deeply rooted in Him - we love you all so much - Sunshine

 
At 10:19 AM , Anonymous Jule White said...

I am sorry you are hurting tonight! I pray that God will lead you in your decision making and that He will give you peace with that decision.

You are not being selfish at all ~ you want what is best for Ashley as well as your entire family. I know you are torn and I pray that God carries you through this tough time. I pray that God gives you the answers that you are seeking and peace about your trip to Omaha.

Your children are so blessed to have you for their mother. You love all 3 of them so fiercly and want what is best for them. I see that daily in this journal.

Praying for rest and peace!

Love, Jule White

 
At 10:19 AM , Blogger Sun said...

Trish - I am going to mail something to you to the address in Texas this weekend - will your family have a way to get it to you in Omaha - or will you be posting an address there if you decide to stay? Thanks - Sunshine

 
At 1:55 PM , Blogger Paulette said...

Wow, what a hard decision you are all faced with. I am so thankful Trish when you share this deep stuff because it so helps me better know how to pray for your needs. We are all as Christian brother's and sisters in this together and I love that I can be a part of your family and pray.
I will pray specifically that God will show you and comfort you with a peace so when the time is right you will just know because his answer will be so clear.
You are an amazing family and I do relate so well to what you are going through with Blake and Allie. I wish I could share with you sometime about my two kids and me being away from them for long periods of times as well. I can so relate to your pain in that and I pray for them every day as well. it is difficult for them as well and I know that first hand. I believe this is why I am so bonded to you all as a family because there is such a need to pray and lift ya'll before the throne. You have my committement to do this for you.
May the Father speak the words you need to hear and give you a peace Trish. I am here.

 
At 2:37 PM , Blogger Karen said...

...praying for wisdom and the peace that passes all understanding...

 
At 9:17 PM , Blogger Amy T said...

Praying for God's guidance and peace. Praying for him to clearly show the way.

 
At 9:20 PM , Blogger Domestic Goddess said...

Such a difficult decision! The sign will be there...
Praying for you and your family.

 

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