Ashley's Story

She will leave fingerprints all over your heart

11/19/2007

Details

Dave slipped out around 4 this morning to catch his flight back to Texas. He will be working 3 very full days in the office and then will catch another flight out of Shreveport to arrive back in Omaha around midnight Wednesday. I told him it wasn't necessary, but he thinks it is. He is going to be exhausted by the time he gets back. I already miss him. Once he left I laid there listening to Ashley Kate as she struggled through a very restless night. She isn't feeling well. Yesterday was a bad day for her. Dave had a really hard time seeing her not feel good. She is different than when we left home and it broke her daddy's heart to see find that she no longer wanted to be held or to play with him. Ash is more content to be left alone. She literally cringes each time she even thinks you are going to touch her. We talked a lot about the changes in her, and we look forward to being home and stringing lots and lots of good days together in hopes of having her return to who she was.

Our visit was really nice and relaxed. We took long walks together, talked late into the night, played games, acted silly, and just enjoyed our days. Yesterday was difficult for me because I knew I would be facing today without Dave. We took Ash out to the zoo in an attempt to distract her from not feeling well, but she only wanted to sleep. The weather was so nice and cool and the long walk around the zoo was calming. There were no crowds and we basically had the place to ourselves. Ash did wake up long enough to enjoy parts of the aquarium. The shark tank is a tunnel that you walk into and the fish and turtles and sharks swim all around you and above you. I think she enjoyed that for a few minutes and then she went right back to sleep.

Her FK level was too high yesterday along with her BUN causing her to be pretty miserable. We gave her a fluid bolus in the afternoon and ran replacement fluids last night so I am hoping things look better for her today. We plan on doing laundry and resting for most of today. She may need another albumin bolus this afternoon and that would cause us to have to get out and go to the treatment center, but other than that we are laying low and listening to our Classical Christmas.

Dave and I put up Ashley Kate's tree the other night. It makes my heart happy and sad all at the same time. Happy to see her purple twinkling lights and pink ornaments that show how much she is loved by those who chose them, but sad realizing it is the 3rd holiday season she has been away from home. Ash has never experienced Christmas in our home and that breaks my heart. I pray that someday she will only have memories of family Christmas' surrounded by loved ones, and that the memories of these early one will only be stories shared with her. How I long for her to be made whole enough to live at home for every holiday that come along.

The details of our meeting basically came down to us sharing our hearts with the surgeon. Reminding them that we were parents who needed to raise our family together in our home. Assuring them that we are willing to travel back and forth even weekly if it meant that our children could be raised together. Letting them know that we are willing to sacrifice our time, our finances, our resources, our anything to bring our family back together. We asked for them to share the time line, the goals, the plan that they had in mind for Ash with us. We sat and visited for a couple of hours trying to get all of our questions answered. We made great progress in the "relationship" that I feel is missing between our team and our family. We are more than just a chart or a number in this hospital. We are people, parents, a family and I am afraid that sometimes the reality of long term hospitalization is that those things are accidentally overlooked. They shared with us that they have a very hard time "sharing" this population of patients with other doctors or hospitals because of the frailty of them and the importance of timing. It all makes sense even though it makes life difficult. The fact that if Ashley needs a biopsy or scope or CT that it can be done in a matter of minutes versus being scheduled a week later when their was an available slot can make all the difference. We agree. This hospital does afford us quick acting physicians who KNOW that timing is everything with bowel transplant and that is why we chose them. So what must happen for us to go home? Fluid balance. Ashley's fluid status is in control of everything at this time. She has made great progress on her feeds and is off of TPN, but she is struggling to stay hydrated without the use of IV replacements. They are not willing to release her to our home as long as she is requiring IV replacements. Ashley's bowel is "leaking" or "spilling" albumin and potassium and other necessary elements. The walls remain weak after the rejection and even though her biopsy shows that the bowel is healing it will still take a while for it to become strong once again. We will need to be able to switch Ash from her IV fluid support to enteral support and pull her line before taking her home. This could happen as quickly as a couple of days or it may take weeks. No one knows. So what happened to Ash causing this episode of rejection? Their best guess is that she got a small viral infection due to her immunosuppression which triggered her high stool output and vomiting leading to less absorption of her FK medicine that then cause her immune system to flare up and attack her organs. They do not "expect" it to happen again. The farther out we can get from this episode without slipping back into rejection the better her chances. She is doing well overall and healing much quicker than expected. The entire team fully expected Ashley to lose sections of her graft, but she surprised them all and pulled out of it without requiring surgical intervention. We are very grateful for that. This has been a very difficult set back for Ash both physically and emotionally. It has also stolen away the progress she had made developmentally at home. Dave, Blake, Allie, and I look forward to getting her back to who she was and then encouraging her to do even more once we are home.

Overall we are close, but yet there are still things that must be accomplished. Our prayers center around her fluid status. It remains fragile and continues to require too many daily changes to take her back to Texas, but as soon as she stabilizes we are out of here. If we lived in Miami, Pittsburgh, or Omaha then we would be celebrating Christmas at home for sure. For some reason God made us Texans and we are proud of that even if it is causing us to spend the holidays apart again. Thank you for praying for our family. We love you and appreciate each of you. Trish

15 Comments:

At 9:15 AM , Anonymous lori said...

Trish,
Thanks so much for the update. We will focus our prayers around the fluid issue. I am so glad you all had such a good meeting with the team. I'm thankful you feel the relationship is better.

I know you hated to see your husband go home. Hugs to you! Please know we are praying for all of you. I hope Ashley feels better today. Rest in God's love and comfort today.

Love in Christ,
Lori and family

 
At 9:19 AM , Anonymous Jule White said...

Trish ~ I am so happy to hear about your wonderful visit with Dave. I know that things are easier when he is there.

I will pray specifically for Ashleys fluids. I will also be praying for continued healing of her bowel. I am so proud of her! She has fought so hard!

Many prayers and much love for the entire family. I continue to hold you close to my heart.

Love, Jule White

 
At 9:19 AM , Anonymous Anonymous said...

Thanks for sharing the current "details". I will be praying for you today as your heart is heavy without Dave, Blake, and Alli. Gee just a couple of days and he will be back! I am so glad you could get outdoors and have a little fresh air away from the UNMC campus. Hopefully you are a little refreshed, but you remain in my heart and prayers as you continue on. Love, Lou Ann

 
At 9:21 AM , Anonymous Anonymous said...

Wow! Thank you for letting us know how to pray for you all.
Beth

 
At 9:40 AM , Blogger Sarah's In the Midst of It said...

Praying for Ashley's fluids, for Dave's energy and stress levels as he balances work and flights out, and for you as you deal with the day-to-day details of it all. And I'm still holding out for a Christmas miracle :)

 
At 9:53 AM , Blogger CrownLaidDown said...

Praying for you Ashley Kate!
With love from Colorado,
Holly

 
At 10:16 AM , Anonymous Anonymous said...

Trish I am still praying. You are such a brave mom. I am amazed by the strength that I read each day. If you get a moment and can squeeze one more name on your prayer list :) :), would you pray for a family member? Their site is babyrich07.blogspot.com. Thanks so much. God bless.
Allison, NC

 
At 10:22 AM , Anonymous Janiece Baldwin said...

Trish, you have given us a very detailed summary of your meeting with the surgeon and I thank you for sharing all of that with us. This gives us a better understanding, as prayer warriors, of what exactly is going on and how we can come together and pray specifically for her~~~for her fluid balance~~for the IV replacements to cease~~for little Ashley to want to be touched, held and loved by her family. That the secure feeling with family will return and that she would welcome seeing her daddy's outstreched hands as he reaches to hold her close to his chest and that she "remembers" the closeness they shared with each other.
We thank You Lord for no further signs of rejection and give You praise for Your watchcare over this precious baby girl. Be with all the family as they travel this uncertain path. Continue to be their Rock, their strength, their Comforter.

We pray always for Your will and that each one that travels along would be drawn closer to You through this family. Thank You in advance for all You do and are doing in the life of Your precious little child.
Give Dave travel safety in these days. Be with Trish in his absence. In Jesus Precious Name~~Amen.

Love and prayers~~~Janiece

 
At 10:25 AM , Blogger Elizabeth said...

Trish,
Thank you so much for the update! I am so happy for the wonderful time that you and Dave spent together these last few days. Our relationship with our spouse is so important especially at a time like this!
I am in continued prayer for you and your wonderful family and will pray specifically for the fluid situation.
Try and take it easy while Dave is gone...
Love in Christ,
Elizabeth in Idaho

 
At 10:26 AM , Anonymous Anonymous said...

Praying for fluid balance, for the desire to be touched, steadfastness for family members in transit, and sustenance for daily finances.

Kristi in Texas

 
At 10:37 AM , Anonymous Anonymous said...

Hold tight little pickle... Prayers are coming! Thank you Trish for the updates & Dave also!
Wishing you a healthy, closer to home holiday!

 
At 11:33 AM , Anonymous Anonymous said...

PRAISE GOD for Ashley's progress and her avoiding losing sections of her graft!! Praying that her personality returns,for that "little pickle" to come out of her "jar" very soon!! Praying, praying, praying for her fluid levels to return to what they should be!
Wow! This is just amazing to me! That little girl is certainly a fighter!! Trish, I am praying for you to have peace of mind throughout. I pray that all goes well for you and your family!
May the Good Lord continue to Bless you all!
Okla

 
At 12:48 PM , Blogger Melody said...

This really has nothing to do with your latest updates, but the past two days, whenever I pray for little Ashley, I have been thinking of "Signing Time".

I think I read somewhere along the way that Ashley is developmentally behind, and that she has a hard time communicating? If I'm right about that, I thought you might be interested in the "Signing Time" DVDs. (Actually, they do show "Signing Time" on PBS stations across the country, so you could check the local listings there in Omaha.) But the shows were developed by a mom who discovered when her daughter was a year old, that she was deaf. So she started to sign with her and other family members started signing with their babies and they were all amazed at how early their kids could communicate through sign. The thing that really made me think of Ashley though, was the fact that this woman had another daughter born a few years later who has spina bifida and cerebral palsy. They were told that she would probably never be able to communicate with them. Amazing all of her doctors, she learned to sign and then to speak and even to sing!

The other really cool thing about the Signing Time videos is that kids LOVE them! My two year old has been mesmerized by them since he was 9 months old! And having a child who was too young to speak be able to let me know that something hurt, or he was hungry or thirsty, was a HUGE help to a frazzled mom!

Anyway, I was just thinking that they might be something that Ashley would enjoy watching to help entertain her during the day, and perhaps she could find a way to communicate with you all as well and what double bonus that would be!

I know this has been way too long, but check out your local PBS station there in Omaha, and if you can't find "Signing Time" let me know, and I'll send some DVDs to you. I really think Ashley would love them!

 
At 2:52 PM , Blogger Morgy's Mama said...

still praying ~ so glad to hear some good news about a plan.

 
At 12:13 AM , Anonymous Anonymous said...

Dear Ashley,

I just read your journal and my heart goes out to you baby girl. You have faught for so long.
Lord God I bring your precious child to you at this moment. I ask you to pour out your healing from the crown of her head to the tips of her feet. In the name of Jesus I ask you this.
And Now I bind All infirmity and sickness in the name of Jesus. God I am asking you to bring baby Ashely & her family home. In Jesus name amen.
I will continue to pray for you. Ashley.

Bebe
Cedar Hill, TX

 

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