Ashley's Story

She will leave fingerprints all over your heart

2/18/2008

Not Good, Not Bad

That pretty much sums up the day here in our little piece of the PICU. The plan for the day was strength training. It never happened. They feared that Ash was just not recovered enough from the trauma of yesterday to really give it a go. Her respiration rate on the vent was set on 10 and she was over breathing it by 50 giving her a total of 60 respirations per minute. We checked her blood gases and they were perfect, but the doctor decided to give her 24 hours to rest and recover before really getting to work. So like I said it wasn't bad, but it wasn't good. They or I in no way want Ash to fail the sprint trials.

I have an issue with that word. The word fail. I am far too competitive a person to like a word that means you weren't good enough. I remember the first time her doctor in the NICU labeled her as "failure to thrive". I was upset! I know its just a term used to describe not having the ability to eat and grow, but it didn't set well with me. To be honest it really hurt my feelings that they thought she wasn't "cutting it". I never really forgave him for calling her that. Every day on rounds I would tease him and remind him that it wasn't an option to say that Ash was failing. Yesterday the knowledge of her failure stung my heart again. Couldn't we say it a little nicer? I want to think of it as a practice run. Acknowledging that she failed to breathe on her own is just too much for me right now. I don't really want to think of it anymore.

Ash spent the afternoon sleeping. After staying awake far more than she slept last night I knew she would be exhausted. She is really agitated today. No blankets! No talking! No touching! No anything! She has tremors in her hands and feet from withdrawal. They are giving her just enough medication to make the vent tolerable, but she is not sedated and she is not happy. They began a small dose of ativan and methadone to help her as she withdraws, but she is still having to learn to cope without the help of the sedation medications.

Our hearts desire is for Ashley Kate to become strong again. At this time they have identified no source of infection. Our best guess is aspiration from all of the vomiting she had done. Since our admission she has not vomited one time. Thats 12 days in a row without throwing up. The cellept was stopped almost immediately upon arrival. We are hoping that was the cause of her trouble. So if I really stop and think about it then perhaps this was all about finding the source of the vomiting? I'm not sure, but if we have truly identified the problem and it ceases to occur then maybe this was all worth it and maybe she won't have to endure the daily vomiting episodes. Just maybe?

I know in my heart that her spirit and the twinkle in her eye will return once she is off the vent and breathing comfortably. I just know it. Right now she is being so good and so tough as she waits on her lungs to heal and grow strong again. I am so proud of her. She still amazes me. I hope this will be her week. The week she gets strong. The week she learns to breathe again. The week she returns with every bit of that ornery streak she is so famous for. I miss her personality!

Thanks for checking on her today and thanks for your continued prayers. Have a good evening. Trish

36 Comments:

At 7:58 PM , Anonymous April said...

Dear Trish,

When I grow up I want to be as strong as you. :-)

There is a little pocket in my heart just for Ashley. I pray for her so often, and thank God for how she has reminded me of the will to live, the strength to keep going, and how precious life is.

Prayers...

 
At 8:00 PM , Anonymous denise said...

I have been praying for you and Ash off and on all day. I am praying for strength for her little lungs and comfort for her body. I ampraying peace for you both. I will continue to hold you all up in my prayers as well as praying for the ones at home who are missing you tonight! love and blessings and a gentle hug for you both. Good night for now may God give both of you a peaceful nights rest tonight. Denise

 
At 8:03 PM , Anonymous Anonymous said...

PRAYING!!

 
At 8:04 PM , Anonymous Anonymous said...

Lord, please touch this little precious child's lungs and enable them to become strong and work on their own. May you grant this mother the gift of seeing her personality return in full spirit. Please bring peace and healing to heart and body of this family. In Jesus Name, Amen!

 
At 8:05 PM , Anonymous Anonymous said...

She's in God's hands.

 
At 8:10 PM , Anonymous Anonymous said...

So happy to hear that Ashley was able to get some sleep. I will continue to pray that this phase of her recovery goes quickly as I can only imagine how uncomfortable this part of the process is for her to endure and for you to have to watch her endure. God Bless you both. I hope tonight will be restful for you both. Praying, praying, praying for you always....Leigh Ann

 
At 8:14 PM , Blogger The Rutland Family said...

God bless you all today. You are in our prayers and will continue to be tomorrow when the strength training begins. She is quite obviosly a fighter and I'm sure she won't disappoint you now.
Have a blessed day!
Because He lives, we CAN face tomorrow!
Love from Georgia!
Pam

 
At 8:18 PM , Blogger Laurie said...

Praying that her little lungs get gentle and thorough healing after the assault they went through. Also praying that the source of the vomiting has been found and eliminated. I know she will be breathing on her own again as soon as a little more healing takes place. And I just KNOW that her ornery little self is still in there, strong as ever. Her twinkle will return too Trish. All in Gods time and I know He is healing her at a pace she can handle. Praying for a great nights sleep for both of you and for JOY in the morning.

Love, Laurie in Ca.

 
At 8:18 PM , Blogger CrownLaidDown said...

Oh good, I was praying that the little puddin' would just get some sleep today and rest. Praying for continued progress for Ashley and thankful for the answers that are coming.
Love,
holly

 
At 8:24 PM , Anonymous Anonymous said...

Thanks for the update...hope that you got some rest this afternoon also. So glad that maybe they figured out why she was vomiting! Continued prayers from a faithful follower! Continuing to believe that God will heal Ashley and ya'll will be back in Texas soon!

 
At 8:25 PM , Anonymous Anonymous said...

Praying for you all to have a restful night. I pray for strength for Ashley.
Blessings,
Lori

 
At 8:40 PM , Blogger Sunny Day Tag Girl said...

Hang in there Trish. You are doing an awesome job. God has a plan, sure wish he would clue us in on it sometimes, but his plan for her life is perfect.

 
At 8:55 PM , Anonymous Anonymous said...

Praying for as much comfort for both of you as possible! Praying for peace of mind & heart!
Praying you and Ashley home!
May God continue to Bless you all!
~Okla

 
At 8:58 PM , Anonymous Anonymous said...

I remember hearing that word, as well! Our youngest had been to the ER with asthma trouble and had to return 30 minutes after they sent us home because he was back in distress. The Dr. - who is a personal friend - said, "If you fail twice at home, we have to admit." Fail? But I did exactly as we were told!

I knew he didn't mean we were *failures* but still chided, "Thanks a lot!"

It sounds like you're on the right, slow track. Thanks so much for the regular updates!

Brenda

 
At 9:08 PM , Anonymous Anonymous said...

You are amazing and I know it is God's grace, but thanks for sharing with us your heart. You are making a difference in the hearts of so many people. We pray that you all get rest tonight and tomorrow will dawn a brand new day, strength, good breathing and courage to fight the battles. our continued prayers in central IL

 
At 9:09 PM , Blogger Shari said...

I am happy that Ash slept some. Sleep is so important for healing. I pray the withdrawals stop soon and she can begin the race to no ventilator and breathing on her own. Know I love you!

Blessings,

Shari

 
At 9:33 PM , Blogger julie said...

Still praying.

Hope you are able to get a good nights rest along with Ashley.

God Bless,
Julie

 
At 9:37 PM , Blogger Elizabeth S said...

I want to be like you when I grow up, too ;) Praying for that sweet baby girl and her devoted, loving, amazing mom (and dad ;)) Also praying for Blake and Allie. I know they love Ashley so much and just want her to get better.

 
At 9:52 PM , Anonymous krista said...

Ashley never ceases to amaze me.
She is very tough, and sweet.
That would be wonderful if the vomiting stopped.
Thinking of you all, and continuing to pray.
Love, krista

 
At 10:00 PM , Anonymous dee buchanan said...

Praying for double strength tomorrow as she starts her sprints. Ditto on April, thank you, Trish, for constantly reminding us of how precious life is.

 
At 10:31 PM , Blogger The Adoption Of William said...

Praying!! I hate vents. My daughter was on one when she had her esophogus replaced. They had her in a coma like state for two days, then they let her come out of it. She went crazy and they had to heavily sedate her, which did not help her breathing...it was a mess. When she got off it she was much better. Seeing her attempt to scream and tears coming out of her eyes was so hard.
Of course what Ashley is going through is far more difficult. We are praying for your whole family daily.

With Love and Hope,

Jen-Willam's Mom

 
At 10:37 PM , Blogger Debi said...

I am praying for your little Ashley. She has made a little niche in my heart. She has a very special family, and I know God has placed her in your lives for a very special reason. Many prayers for you guys, hang in there.

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

I have been gone most of the day. I just want to let you know that I am thinking and praying for Ashley to recover and become stronger. Tomorrow is a new day! Hang in there baby pickle. We are right here cheering you and your family on! Good night, Colleen

 
At 11:51 PM , Blogger Elizabeth said...

Please try and ignore the ignorant ones here...there are so many of us that are in continued prayer...we love you guys so much!

 
At 11:52 PM , Blogger Gretchen said...

xxxooogretchen

 
At 11:58 PM , Blogger Betsy McK said...

Praying for little Ashley to have a strong day and week ahead. It sounds like you are doing just a wonderful job of being her voice and making sure she is as comfortable as she can be. I'll check on you all tomorrow :o).

 
At 1:11 AM , Blogger The Dean Family said...

Trish,
Still praying! Love ya girl friend!
Angela

 
At 2:00 AM , Anonymous Janiece Baldwin said...

Just wanted to let you know that I have read every post and comment even though I havent't commented lately. Just praying, praying.

I saw Blake at church the last two Sundays and spoke to him. He is such a cute young man and polite. I know how proud you are of him and Allie.

I truly pray that you two girls get some much needed rest and sleep tonight. Hope the morning light will bring new blessings and that progress will be made with the strength training.

If the doctor's will check all of little Ashley's records, where in the world has it been recorded that she has failed. My goodness, let's see~~~made it through the triple transplant, overcame cancer, came out of cardiac arrest, etc., etc. How can anyone ever think the word "fail" is linked to her at this point. It may take her a little longer, than most of us would like to see, to accomplish some of the tasks that have come her way~~~fail??? no way.

Great news that the vomiting has ceased. Keep up the great work, Ashley, and show 'em what you are made of.

Love and prayers~~~Janiece

 
At 8:09 AM , Blogger Wendy said...

Yeah Ashley for no more vomiting! Yeah Ashley for over-breathing the vent!
Yeah Ashley for getting much needed rest!
Yeah Ashley for being the sweetest, toughest little girl in the world!!
Prayers for today that Ash continues to heal, gain strength and get thru the withdrawals and off the vent.

By the way Trish, in October you were in a hospital in Omaha and I was in a hospital in Guatemala and even with everything you were expereincing you gave me encouragement and strength. I will never forget that. You are my hero.

 
At 8:09 AM , Anonymous Anonymous said...

Let you Will be done on this Child Lord! Heal Her or set her free...Praying for this sweet child in TN.

 
At 8:15 AM , Anonymous Anonymous said...

Praying that this will be Ashley's week! More and more amazed everyday by Ashley's strength and your faithfulness! Sending many prayers your way!

Jennifer in OKC

 
At 9:31 AM , Anonymous Lisa said...

Praying for Ashelys lungs to get stronger, praying for peace and comfort.

 
At 10:31 AM , Blogger preechrboy said...

I don't want to preach to you sis; I just want to encourage you: remember that our 'failure' leaves room for HIM to provide victory.

Be encouraged by Jesus' words to Paul: "My grace is sufficient for thee: for my strength is made perfect in weakness."

...Praying for the 'perfecting' that will come from Ashley's weakness.
-Love Ya and still praying EVERY DAY

 
At 11:07 AM , Anonymous Anonymous said...

Thinking of you both today! I pray that all is going well and you will have good news for us later.
Always praying.
May God Bless you all
~Okla

 
At 11:07 AM , Blogger Amy T said...

How wonderful that she has not vomited since she's been there. That is definitely a praise. She's such a little fighter that she is an amazing inspiration to the rest of us, just like your whole family is. Praying too that this is "her week". Thanks for keeping us updated. I know it's not always easy, but it's always appreciated.

 
At 11:50 AM , Blogger Laurie said...

Praying for you on this new day and wonderful healing for Ashley to be taking place in her lungs and little body. God has His eyes on her.

Laurie in Ca.

 

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