Ashley's Story

She will leave fingerprints all over your heart

1/06/2008

Big Mistake

Last night we made a big mistake. A mistake we had yet to make, but honestly was sure to come at some point. Dave and I left the house with Blake and Allison to attend Blake's basketball game and we left Ashley Kate, and Nan, and the CELL PHONE at home. Not good. Especially when things began to change with Ash's condition. Nan had no way of contacting us when the vomiting and fever began. When we walked in last night I could see the panic on my mom's face because she was here that day in September when things began the same way. She was clearly a little frustrated with us and she had every right to be. Taking care of Ash can be extremely frightening when she begins getting sick. I can't believe we left those silly phones! Anyway, once we walked in Dave and I became just as concerned. Ash had spiked a fever for the first time since coming home and this combined with the onset of vomiting is a red flag for us. It was a very tense night in our home as we tried not to alert Blake and Al of our fears. We put Ash to bed and tried to play a game of Monopoly with the kids. I continued getting up to check Ash's temperature and listen to her breathing. After the game I was in Blake's room and he knew things weren't right. We talked about the fever and what it would mean and I let him know that if it went any higher we would take her into the hospital and not be here in the morning when he woke up. "Just pray she's ok, thats all we can do for now," I told him. Allie didn't really figure out how tense we all were. So, I blogged and ask you guys to pray and this morning I KNOW that you did.


Ash is looking better this morning. Her fever broke during the night. She fell asleep hard and did not wake until this morning. She has not thrown up, and she is sitting in the middle of the floor playing while I type. That is more than she would do yesterday. She smiled a couple of times and gave her daddy a big hug. I think its going to be ok. I pray that she is ok. Things are very scary with Ash these days. I want so badly to relax and know that life will be just fine with no more surprises along the way, but I know that is not the reality of where we are. For some the road after transplant is very, very smooth and much of their struggles end after the recovery. There are others who don't survive the recovery and their struggles end and they wake up in the arms of Jesus. For us we seem to be somewhere in the middle. Things aren't easy and may never be, but she is here with us. Happy and living her little life to the best of her ability with what the Father has given her. We are more than grateful for each moment of every day. Today looks to be starting out better than yesterday.

Our prayer requests concerning Ashley Kate are these:

We are praying she is battling nothing more than this persistent cold. It has been with her for over a month now and I am told it will remain for quite a while.

We are praying for her organs. Thankful as always for each one of them.

We are praying for her growth and development. In many, many ways Ashley Kate is still an infant. We believe that some day she will learn to do the "normal" things like rolling, crawling, walking, and talking, but until now she has not.

We are praying for her labs. It has been a very difficult road to walk without her central line. Ash's veins are very little and very fragile. It seems that when they locate one it either clots off too quickly or likes to blow before giving us enough blood to run her lab work. We need 5cc of blood each draw for the necessary tests. Last time we were only able to draw 1.2cc. She is still bruised from labs that were attempted two weeks ago and Tuesday morning we will try again. Our home nurse e-mailed our team in Omaha and explained the difficulty we were having. They allowed us to go to every two weeks and if she is stable on Tuesday then we may be allowed to go to monthly labs. We are praying for this. Her little spirit is having a hard time dealing with all the sticks and pokes.


We are praying to remain home. Our family is better together and Ashley Kate is happier here. She would rather be home than anywhere else and it is so easy to see that in her eyes.

Thank you guys for praying last night. I have tried not to load our blog with the struggles lately and have wanted to focus on the blessing of being home. Last night we were desperate and I knew we needed each one of you to pray. So from this mommy's heart to yours I want to say Thank you again for standing with us. You are very, very loved and appreciated. Trish

22 Comments:

At 11:24 AM , Blogger jtcosby said...

SOOO glad to hear Ash is doing better! I am praying and will continue to do so! Hugs and love from TN

 
At 11:26 AM , Anonymous Candy said...

Praying for all that you ask for. Ash does so much better at home with all that love that surrounds her. Hoping that today is a good one. God bless you and your family.

 
At 1:24 PM , Blogger Jennifer said...

first time commenting here...I read your blog often though. I have 4 kids and 3 out of 4 have had colds for months now, and they just don't seem to get better. The doc. have said that they have been allot of this seen. When we sit in church we hear coughing all around, everyone seems to have it. Allot of mucus!!!! so hold in there it took my Down Syndome son along time to get rid of his 3 months!! Roseola is going around as well!! So if she breaks into a rash in a could days you will know why. They also become very fussy, lost of appetite, sleepy, sore throat, swollen glands, and HIGH fever up to 105. So this could be true for her...but you will know with the rash.

Blessing to you all~
Jennifer
TN

 
At 2:02 PM , Blogger Cindi said...

Our prayers were answered. Thank you Trish for giving us the opportunity to fall at the Father's feet on Ashley's behalf. That is what we want to do; help when we need to. We love celebrating Ashley's successes, but we understand that she will need us to intercede on her behalf from time to time. I know many of us pray for Ash every day, sometimes every hour, and being able to have specifics are wonderful. Please keep us posted as to your requests. Thank you so much for being such a witness. Enjoy your Sunday. God Bless you, Cindi in OK

 
At 3:31 PM , Anonymous Vicky said...

Trish,
Praise God that Ashley is feeling better this morning! Always feel free to share your struggles and your blessings. We are here to rejoice when you are rejoicing and cry out to God when you have a need.

 
At 5:11 PM , Anonymous Kathleen said...

I am so glad Ashley is better! I was unable to check earlier. As soon as I got back online I had to check on her. I will keep praying for those requests you mentioned. We're here to share your struggles as well as the good times. I loved that Ashley gave you a real hug the other day!!

 
At 6:07 PM , Blogger Sun said...

We are praying! SO glad that she is feeling a little better...you guys are on our hearts tonight and know that we love you and are praying! Sunshine

 
At 6:16 PM , Anonymous Anonymous said...

Trish - Our prayers are with you always. I am so glad that pickle puss is better this morning and that she is comfortable. I can not imagine how hard it must be to feel that a simple vomiting episode can strike such fear. In 'non-transplant' kids, its like a monthly occurance. They eat to much, run to hard, cough to hard.. ya know kid stuff. But to have to be SO cautious must be strenuous. I have to say that I believe in my heart that the trip you guys took home before Christmas, help Ash to fight harder when she got back to the hospital. She knew that home was still home and I think it helped give her a boost to see her family in that little precious house. :) Much love to you and your family. We love every word on your blog and always feel blessed when you let us know how she is doing. Our prayers for her continued healing and that your home will be the haven that you want it to be.

Lots of love - The Freebergs in Wisconsin

 
At 6:16 PM , Blogger camille said...

We're praying for you guys. I hope she recovers from her cold soon. Thinking of you all!

 
At 6:46 PM , Blogger Shari's Page....... said...

I am glad to hear that Ashley is doing better. Most certainly an answer to prayer. Oh, Trish, sweetie, we all make mistakes all the time such as leaving phones, forgetting the driver's license and more. I am sorry that happened. Know I still pray for that precious pickle daily.

Hugs,

Shari

 
At 7:56 PM , Blogger ange said...

Don't ever feel you cannot come out and be honest and share PLEASE! WE are so blessed to be able to pray for little Ash and your family. Thank you for including us and know we will continue to pray
ange

 
At 9:49 PM , Anonymous Anonymous said...

please share with us so we know how to pray..we are doing that in central IL..

 
At 9:56 PM , Anonymous Anonymous said...

OH WOW! So so glad to know she is doing better. You all are ALWAYS in my prayers!! I will pray specifically too though. I did not find out about this until just now because I have been away from the computer for a couple of days! Goodness. Praying Praying Praying always! May God Bless you all!!
~Okla

 
At 10:42 PM , Blogger Laurie said...

Trish,

Please know I come here to check on Ashley daily, loving the great news but also to be alerted if prayer is needed. Never apologize for it not always being cheery. I am praying for all that you requested and that rejection is something left behind in Omaha. She does best when she is home with her loving family. God is there with her wherever she is and He will bring her through. Peace and rest for you tonight and so blessed she is better today. Love you guys.

Laurie in Ca.

 
At 10:51 PM , Blogger Toni said...

Thank you for the update, Trish. I completely understand (and expect) that you need to be with your family, living in the moment and not living online right now. I'm praying and I know so many will be here when you need us for more specific prayer requests.
Blessings,
~Toni~

 
At 4:10 AM , Blogger Myfriendconnie@SmockityFrocks said...

Still reading and praying for you sweet family.

 
At 9:31 AM , Anonymous Anonymous said...

My heart is super blessed to hear of Ashley's improvement! Praying for the list you posted! ~Chan~

 
At 10:05 AM , Anonymous Anonymous said...

Praying for all these and all the others the Lord lays on our hearts concerning Ashley and you, David, Blake and Allie. Without ceasing.
Nikki

 
At 1:15 PM , Anonymous dee buchanan said...

Sorry I haven't kept up lately. I am praying for all of you. This cold thing is TOUGH, especially for you all. Praying her fever stays gone, and she gets better-no hospitals.

 
At 2:36 PM , Blogger Gretchen said...

I'm glad Ashley is doing better, and I'll continue to pray for her. But, please never feel like you have to shield us from anything, unless you want to, of course. We want to stand in the gap during the trials and triumphs. God be praised, either way. (((hugs)))

 
At 3:03 PM , Blogger Alicia said...

Praying sweet Ashley through! I hope she gets to feeling better very soon.

 
At 9:46 PM , Blogger Sarah's In the Midst of It said...

Trish, I missed the prayer request from earlier but am joining in now, in addition to daily praying for her anyway! I hope tomorrow brings even more improvement for Ashley, and more peace for you and Dave (and Blake).

 

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