Ashley's Story

She will leave fingerprints all over your heart

10/18/2007

Rise and Shine

Our day began around 4a.m. Ash woke fussy and uncomfortable and has remained that way. Up until that time I feel like she rested fairly well. She tolerated her vitals being taken throughout her IVIG infusion and even slept through some of them. At 5:30 x-ray came rolling in and I thought, "Well at least were already awake this morning." Then it was time for labs to be drawn, and the day took off from there. Hospital life is tough on little ones. Their sleep is interrupted constantly and they never quite get into a routine. I managed to stretch her tubing far enough to reach the rocking chair, but it didn't help. Her chest is sore from the drain and she is no longer tolerating it. She picks and pulls at the dressing trying to get to it. The doctors would like to give her a one time dose of morphine to help her get through this period today and hopefully get her some rest.

We are not removing the drain today. We all had hoped for it to stop draining by now, but it hasn't. It is slowing and that is good news, but not enough to remove it. She will have to keep it for at least one more day if not two. We will be turning it off of suction and onto water seal today to see if that helps it to stop draining some. She can't wait for it to be gone.

We are taking her down to CT today to look at the bowel. We are hoping to see that the nuemetosis(?) has resolved enough to begin some feeds. Unfortunately she continues vomiting and until it stops as well we are stuck on TPN. As long as she is on this course we will have to stay here. Things will eventually turn around I just have no idea how long it will take to get her going again. The removal of the drain tube will be huge when that can occur.

My plan today is to keep the room as quiet as possible and to try and soothe her enough to get her to sleep. The lights are down, the music is playing, our "candle"(thank you so much "cheerful giver") is glowing. If she sleeps then I will begin a new book by Max. Low key is the plan outside of our trip to CT.

I just wanted to take a moment to say:

Sandra, thanks so much for all you have done. The quarters have made my life so much easier. You have been a blessing.

Krista, please tell the girls thank you from Ash. We loved their gift!

Brent and Darlene, what a great idea for her crib. The lights are glowing as I type and I thank you so much for the package. The socks are adorable!

Jule, the mask is perfect! I am sleeping so much better, and the laundry burden is so much lighter. Thank you my friend.

Glenda, Thank you. You put a huge smile on both of our faces.

Dee, I can't thank you enough for the meals. It has been wonderful to have something home made for a change.

For the many card and letters I say thank you. What a joy it is to receive mail from you and to hear how God is using Ashley Kate in you lives. Thank you for caring and for praying.

Amy, I would love to receive the CD you have put together. What a blessing.

Many have asked what Ashley is allowed to have and not allowed to have. The only thing I know that we can not receive are plants, flowers, or latex balloons. Thank you for your interest in making her days bright. You are all so loved.

Have a wonderful day and please know that you are appreciated for making a difference in the life of our family. The days aren't so lonely knowing you are all out there praying for us and thinking of our sweet girl. Take care my friends. Trish

12 Comments:

At 12:14 PM , Blogger The Dean Family said...

Sounds like a good game plan. Quiet and peaceful. We are praying she will be able to remove the chest tube soon as well as for her CT today. My kids always tell me how cute Ashley is when I pull up your blog. We are all praying for her. I pray you both get well rested today.

 
At 12:15 PM , Blogger The Dean Family said...

Oops!
Love,
Angela and Audrey in AK

 
At 12:21 PM , Anonymous Anonymous said...

Still praying for you! Seeing her sweet face in pics makes me happy! :)
I hope y'all can take that drain out soon. :(

God Bless you,
Anna

 
At 12:26 PM , Anonymous Anonymous said...

You are such a good Mom, I can do nothing to help, but pray and I have lots of time now to do that.
I trust God surrounds you and Ashley with His arms of love and gives you peace and healing!
praying in central IL.

 
At 12:50 PM , Blogger Amy T said...

Well, it's not by leaps and bounds, but I do see progress being made and that is good news. I am so glad that you are being ministered to so well by the readers here. The love of God's family is so evident. Praying you are back in your little room upstairs for the big visit next week.

 
At 1:17 PM , Anonymous Anonymous said...

Trish - bless your heart! You are so sweet to sit down and thank each and every person and to answer questions. Thank you for continuing to witness to me. I will get a little package sent off to you guys this weekend....my son wants to help pick something out for Ashley (he is 5 yrs old so don't be surprised if Ashley gets some HotWheels or a dinosaur from him!).

I am so excited that the rest of your family will get to be there with you next week. That will make such a difference in her AND in you! I am sure Allie and Blake need their Mommy too!

Thank you for the all the updates, that lets us know what to specifically pray for. We are still praying at LeTourneau...as a matter of fact, the teachers there were sent something about Ashley and asked to pray for her. God loves your family so very much!!

Continuing to pray...
Amy

 
At 1:31 PM , Blogger julie said...

Praying sweet Ashley gets some good rest today.

Warmly,
Julie

 
At 1:37 PM , Blogger cindy/barron said...

So happy to hear everything is going a little better. The pictures are so cute .

 
At 2:07 PM , Anonymous Anonymous said...

I do pray that you have that "low key" day - this rain should add to that atmosphere. Things have been crazy here and I miss seeing you, but you are in my thoughts and prayers constantly. Keep looking up, Lou Ann

 
At 2:22 PM , Anonymous prayer mom said...

I have been directed to your Ashley only in the last few days. I have been praying for Ashley and checking in on her a few times each day. Last night I went back and read your whole Ashley journal. While reading, God impressed on me that He had brought me here to pray especially for Blake and Allie--that Ashley was well covered in prayer. So tell them they have a prayer "grandma" who will be holding them up in prayer moment by moment. If they ever need prayer just for themselves, I am on My Space at URL: myspace.com/life2knj

God bless you and keep you all.

 
At 3:06 PM , Blogger Michelle J said...

Hello Trish and Ashley,
I sure hope you are having a quiet peaceful day!! I think about you both often and send you good kind thoughts of love and health.
Trish: I was just wondering if you received the Mezuzah yet? It was shipped on Oct 15th...and it was sent to Room 6474-6NS Patient Mail. I am sorry to bother you about this i know you are busy but if you have a moment please let me know!!! I love little Ashley and if there is anything else i can do please tell me!!!! I want to be a cheerful giver! Thanks and love to you both...Michelle

 
At 4:10 PM , Blogger Gretchen said...

Praying ((((hugs))))

 

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