Ashley's Story

She will leave fingerprints all over your heart

9/27/2007

Troubled

My heart is extremely heavy tonight as I discover that Ashley has been started on a high dose of a drug that I HATE. I realize HATE is a strong word and to put it in all caps makes it even stronger, but its how I feel towards the idea of my little one being placed back on it. Not only do I hate the fact that they have written orders for her to be placed on it, but I HATE the fact that it was done without discussing it with me. I realize I am not her doctor, but I am her mom and if you are going to put something this strong at such a high dose in my daughter then I believe it should be discussed with me. Call me crazy, but its how I feel. There has got to be another option.

We worked for 7 months to get Ash off of this drug and we even discussed the "slippery slope" of it with the doctor who was on service when we arrived. I understood that Ashley's rejection would be treated by 3 large doses in 3 consecutive days and that was it. I specifically shared my feelings about putting her back on it and then being "stuck" with it. We do not want Ash to have to live her life on this drug. The side effects are so difficult for her. It steals who she is. She loses her sweet personality and becomes miserable. It changes her appearance drastically. It causes her not to grow, to feel miserable, to lose her own adrenal system(making it almost impossible to get her off of it), to have insomnia, to shake and tremble, and the list goes on and on and on.

My heart is so upset. I am praying tonight for God to send something else. Another way to do whatever they think this miracle drug is going to do for her that won't do what it does to her. It has been such an emotional day. Long, quiet, lonely. Ash felt miserable for most of the day and I couldn't put my finger on it. Guess what I discovered tonight? She was given the first dose this afternoon. No wonder she started out one way and then ended the day another. My eyes are full of tears and my heart is racing. I don't want this for her. It is not what I want for her quality of life. Please, God make another way for Ash.

I have fought back the tears all day and now they just won't stay away. I am sad, frustrated, and home sick. I just want to take Ash home and give her an amazing life. I feel as though we have come back and getting out is not going to be easy. I apologize for the tone of this post. I realize it sounds awful and I truly am battling within myself over it, but I want to take my baby and run back to the safety of my family and my home.

In the morning I will ask them to hold the dose that is scheduled until I can attempt to discuss my feelings toward it during rounds. I know my frustration and concern will not be met with understanding. This is just what they prescribe for transplant children and questioning it will not go over well. Please pray for me. I have fought this battle before and winning it is very unlikely, but I am studying the facts so that I will be well prepared to approach the subject once again. I don't have any peace tonight so sleep will probably not come. If you have a transplant child yourself and can lend me any advice will you please let me know what if anything I can do. I would truly appreciate it.

35 Comments:

At 8:50 PM , Blogger atwinmom said...

Hello,
I was reading your post and just as I refreshed the page you had posted again! I find it very difficult to read your post because I too have a transplant child. He's six, he had a liver transplant at three, and he just suffered rejection last month and is currently weaning back off his steriods. I don't know what I can do for you, I can listen, I can support. I too have practically become my child's nurse and doctor almost more than a mother and I harbor bitterness and resentment for this, but due to the great friend that showed me your Blog, who also introduced me to living in the presence of God, I have found some peace and focus in life. Please, please anytime at all, you may email me, atwinmom1@yahoo.com for anything.
Your baby and your family are in my prayers!
atwinmom

 
At 8:59 PM , Blogger Amy T said...

Praying that the doctors listen and that they follow where God wants them to go and that if God wants them to go that way, He'll bring you peace about it and if He wants them to go a different way, He'll give you the right words to say.

 
At 9:04 PM , Blogger Kristi said...

I will continue to pray for you. Specifically that the doctors will listen to your concerns and that you might find peace tonight and be able to rest. I have contacted a wonderful lady from my church who has a daughter that underwent a transplant to see if she might be able to help you.

 
At 9:07 PM , Anonymous Kristi Cooper said...

While I do not have any experience with transplant, I have experienced making decisions about my child's medical care that were against what the doctor's ordered. It is true that most doctors have a protocol for just about everything. I'm sure it is what works best in most cases, but not every child/case is the same. Our son was diagnosed with Type 1 diabetes when he was 8 years old. Within 24 hours of being admitted to the hospital, he suffered a massive stroke leaving him in a coma for 6 weeks. We were told he would never breathe on his own and would have to have a traech. God was gracious and fought that battle for us because we were in no position to handle that one on our own. He came off the ventilator without any trouble. The next thing in their standard protocol was to put in a feeding tube because he would never eat on his own (so we were told). Even though we agreed to do it, I was in such turnmoil and unrest because God would not make this decision for us as He had done before and I was afraid of making the wrong decision for my child. I believe the Lord put this unrest in my heart because it was not the right thing for Jonathan. We made the decision not to do the procedure while we were waiting to go into the surgery. If we had gone through with the procedure, it would have been a pointless surgery and trauma to my son's body because within 2 weeks, he was eating on his own by mouth. I know our situation is different from yours, but I would encourage you to stand up and appeal to the doctors on Ashley's behalf. I believe those troubled feelings are there for a reason and I will be praying for you that the Lord will give you the grace and courage and the words to speak to the doctors about this. I will also pray that you will find favor in their eyes. God has made you the ultimate responsibility for your child and He will show you what you need to do...even if it is against what the doctors have ordered. Here is a Scripture I clung to during those difficult days of my son's illness. I will be praying and claiming these verses for you tonight. Be strong and courageous...for the Lord your God is with you.
Praying and Believing,
Kristi Cooper
Isaiah 30:19-21 - O people in Zion, inhabitant in Jerusalem, you will weep no longer. He will surely be gracious to you at the sound of your cry; when He hears it, He will answer you. Although the Lord has given you bread of privation and water of oppression, He, your Teacher will no longer hide Himself, but your eyes will behold your Teacher. Your ears will hear a word behind you, “This is the way, walk in it,” whenever you turn to the right or to the left.

 
At 9:12 PM , Anonymous Anonymous said...

I am praying for you and the doctor's as decisions are being made. ~Chan~

 
At 9:20 PM , Anonymous Anonymous said...

Praying for strength and wisdom for you, praying that God will give you the words you need when speaking with the doctors. Praying for continued improvement for Ashley.

You will make the right choice for Ashley, know your facts, know your child and trust your heart.
Beth

 
At 9:28 PM , Blogger cindy/barron said...

Hi Trish, I have not faced what you have, but we as mothers do what our hearts guid us to do. I know that in the years ahead my son will be on list for a kidney transplant, and as his mother on want to try and do the best even if it may seem wrong to some. Trish i believe that your doing what any devoted mother would do. I am praying for the doctors to be understanding to you, for peace of mind for you and rest. I pray that God guides the doctors in the way that they should go not by protcol.Trish again i want to say thank you for letting us be apart of a very special little PICKLES story, There was so many things i took for granted before i started following Ashleys journal. Thanks for bringing me so much closer to the LORD. I love you guys and girls I would have loved to get Ashley a new DVD player but understand

 
At 9:32 PM , Anonymous Anonymous said...

Trish--you are feeling and doing everything a mother should do. There is a reason you don't have a peace and God will direct you in the ways you should go! We are still praying and sending lots of love to little Miss Ashley!

Mistie

 
At 9:34 PM , Blogger Kelli said...

You have every right to question what they are putting in Ashley. Forget the moral ones. You have every. legal. right.

When I was hospitalized two weeks ago, the attending nephrologist decided to ignore everything I told him about my current treatments and past experiences. He even failed to believe me when I told him that, although I'm on dialysis, I still make at least 4 liters of urine a day. On my own.

So, he put me ordered excessive diuretics, changed my current meds deleting and adding new things helter skelter. Only because I asked the nurses about every. single. thing they brought in to give me either IV or pills did I find out.

Bottom line, I called the attending Internist who was in charge of my case and explained my concerns. I told the nurses there were things I would not take and they listened, fortunately. The attending talked to the neph and stated that nothing was to be ordered for me without his consent first.

I was lucky. But only becasue I stood and asked the hard questions. And honestly, the nurses were glad that I cared enough about my treatment to be informed.

Stand strong. Ask. Require answers. All they can say is "no", right? It ahs to be a team effort with all of you. You and your husband have to comfortable with how Ashley is being treated, by everyone.

I'm praying you strength and wisdom. Oh, and lots and lots of rest :)

 
At 9:36 PM , Blogger Keri Ann said...

I'm sorry to hear about this turn of events! I will definitely be in prayer for you as you prepare to be your daughter's advocate. I can only imagine your turmoil; I will pray for your peace. I will pray for your wisdom as you make decisions concerning Ashley's care. I will pray for the doctors to have ears and minds open to what you have to say, and to be willing to discuss all other options. Most of all, I will pray for God's hand to be in the midst of this situation, working it all for His good and His glory.

May you rest tonight.

 
At 9:37 PM , Blogger ivey elizabeth said...

You must stay strong for Ashley. You m.u.s.t find some way to rest. I know that I am 'preaching to the choir', but you know that no sleep/at least rest will make it harder for you to discuss options with a doctor. Hang in there. You are not alone.

 
At 9:43 PM , Blogger Connie said...

I will pray for you. I know the drill about the tears, and I feel for you. I'll be praying.

 
At 9:47 PM , Blogger jtcosby said...

I will pray that the doctors listen to you as more than a mother but also as your child's advocate. That is what you became the second God gave this child to you. I pray you will have discernment in the choices you want the doctors to make...you can do this Trish, you are an amazing woman who listens to God when He speaks to you. Praying you can also get a little rest!!

Love,
tamara

 
At 10:14 PM , Blogger PerryRocks said...

You do have a say in what goes in your child. They should have at least TOLD you about it and discussed the "pros" and why she absoulty needs it. I can't understand your frustration-but i could only imagine. I will continue to pray with all might might-for Ashley for TOTAL healing-for strength and comfort for you and dave and allie and blake.

 
At 10:36 PM , Anonymous Anonymous said...

Yuck. What a hard position to be in.

It's very difficult to turn the care of your child over to the judgment of someone else. On the one hand, you know them better than the physician; on the other, they know medicine more than you. And sometimes, you have to go a route neither of you are particularly thrilled with, but it's the least of two evils. Figuring out which route will do the least harm is sometimes almost impossible.

We'll continue to pray that both you and the Dr's are open to each other's perspectives, and able to arrive at the solution that is best for Ashley.

Brenda in N E

 
At 11:24 PM , Anonymous Anonymous said...

Oh Trish-

I can only imagine your frustration, sweetie! I know what drug you are talking about and you are right; it's a doozy drug! An icky one! I hope and pray the Drs. listen to you. Hold onto your faith! And, you need to say something about why they didn't consult you first! You are doing an amazing job! I pray Jesus holds you tight tonight and gives you the peace you need to rest.

I love you!

Shari

 
At 11:26 PM , Blogger Elizabeth S said...

I don't have a transplant child, but I wanted you to know that I am praying for you. For wisdom to know as much as you can before you talk to the doctors. For understanding from the doctors when you talk to them. For God to remind them of a drug that maybe they didn't think of trying instead. And if all those things don't work, for God to make it bearable for Ashley; for Him to take away the side effects. Praying...

 
At 1:03 AM , Anonymous Anonymous said...

We are praying for God to provide the answers to the physicians there at the hospital. We are praying for those answers to be the ones best for Ashley and ones that Mom and Dad feel comfortable with. I know your heart must be so torn right now. Bless your heart. I know you must feel so frustrated and I don't blame you for wanting to take Ashley and run. Well, I hope you at least got a little sleep tonight. Maybe things will be better in the morning. God bless you. Keep up your strong faith in God. He will get you through as he always has. He promised to never leave us nor forsake us so hold on to that promise. Love Always, Matt and Cindy Adams

 
At 1:18 AM , Anonymous Anonymous said...

Praying that the doctors would come in with open ears tomorrow, praying that God will protect Ashley from the rotten effects of this drug, praying that her mama would find peace and rest tonight.
As always, I am praying for a speedy recovery for Ashley and that God's comfort would cover your family in Texas and Nebraska.

 
At 1:52 AM , Anonymous Anonymous said...

If and when you really want to leave that hospital and they won't "let" you, all you have to do is to continue to "refuse" treatment--that's the key word. Of course, they may call child services on you or not let you ever return . . . hard to know what to do--but if you reach the absolute end, then just use the "refuse" word and be ready to accept whatever consequences that follow.

 
At 6:02 AM , Anonymous Anonymous said...

Hey Trish,

The docs want to protect Ash's organs, but with her history of PTLD they do not want to over immunosuppress. The steroids are the next line of defense. To find out options, you need to talk to someone at the other transplant centers -- Pittsburgh is probably best. Their success/survival rates are highest, so ask them about their protocol. Maybe for kids with Ash's history they would wean, or use another drug. But that is where you will get your best information. Do remember and find some peace in that they have been doing this for many years now, and the docs learn from the failures/successes of the past. Contact the transplant coordinator. You can find him/her from the main site, following the links to intestinal transplant.

 
At 6:40 AM , Blogger Carey said...

Hi Trish!
Please know that I am praying for you and your team of Drs. to treat Ashley with the best possible routine. Im praying for Ashley to be comfortable and rest. Im praying for your family back home who miss you and your daughter.

 
At 7:06 AM , Anonymous Anonymous said...

I would suggest getting another opinion when the time comes. Parents have very little, if any, rights in a hospital. It is a joke to think signing the consent forms is actually "consenting" because the doctors will do what they want anyway.

Only an adult can "refuse" treatment. If you refuse a child's treatment they will do it anyway. They will get the state, DHS, FBI, etc involved until they do what they want.

That is why it is critical to have a good medical team and a back up team as well for a second opinion. Remember, doctors look at themselves as the ultimate answer and they are not. Often a mom knows far more about her child than the doctor does. Be careful not to prick their egos, that is when the real problems kick in. If they sense you are not agreeing with them, they really dig their heels in then. However, MOST doctors are perfectly fine when someone asks to get another opinion.

A nurse of 24 years...

 
At 7:16 AM , Anonymous Anonymous said...

Praying for your whole family today... God Bless.

 
At 7:23 AM , Anonymous Anonymous said...

Trish as a mom that has had a child with medical issues, I have to agree with you. My son was not as complicated as Ash, however I beleive God gives us discernment in the path that we should go with our children. I am praying as you approach this subject with the doctors and am praying you are given a substitute drug. God bless you as you fight the good fight and keep strong in your faith. God will not let you down. Be blessed.

Allison NC

 
At 7:27 AM , Blogger KimberlyDi said...

I came home from work one day. My son was lethargic. Completely unlike his ADHD self. His doctor was out of town and my only choice was to take him to the emergency room. The doctors were treating me like a over-reacting mother while I was in the waiting room. Until they examined him and found that he had pneumonia.

They may be doctors but you are her mother. They don't know her like you. They don't know the experience that you've already had with that drug. You're knowledge of her is valuable. Stick to your beliefs. Fight for her.

 
At 7:44 AM , Blogger Sun said...

we are praying ~ Sunshine

 
At 8:21 AM , Anonymous deanna buchanan said...

Trish-I believe that legally, doctors have to explain to you what they are giving, their side effects, and get your consent before they administer any medication. If they did not do that, then they are breaking the law. Maybe you can contact other transplant hospitals (Iowa City, Ia, and St. Loius, MO for starters-you probably know of more than I do) to see if they have any alternate drugs to recommend. Keeping you constantly in our prayers....

 
At 9:06 AM , Anonymous heidi said...

Follow your gut. Many prayers.

 
At 9:13 AM , Anonymous Anonymous said...

Yes, legally they cannot start doing things to her that you do not know of. However, in her case, she has been on these drugs before so it is different. Also, if this is life-threatening, which it appears to be, they do not have to tell you what they are doing.

My strong advice would be to go the second opinion route. They will not mind that, or they should not mind it.

Many prayers for you and the whole family...

A nurse of 24 years...

 
At 10:04 AM , Blogger Kristy said...

Dear sweet precious family,
praying for you in Oregon.......

 
At 10:30 AM , Blogger Barbie@ Mamaology said...

I will pray for you. I am sorry for all you are going through. May God's grace be sufficient for you each day!

 
At 10:44 AM , Anonymous Anonymous said...

I don't believe the doctors,hospital or nurses need all this bashing some of you are writting.Don't you think they are doing the very best they can? Why not just pray for the little girl.

 
At 1:23 PM , Blogger Gretchen said...

Lord, hold them all in the palm of Your mighty hand, I pray. In Jesus' name. Amen.

 
At 9:53 AM , Anonymous Anonymous said...

Food for thought ...

* Ashley belongs to the Creator/God and not us and whatever is meant for her life will be regardless of our desires. We have all learned from Ashley and your blog probably more than any other event that may ever touch our own lives.

* You are a human being, not a Christian "machine" and are allowed to be human like everyone else. Don't be so hard on yourself...you are a human being. It is ok to grieve, question, cry, feel weak, angry, frustrated, etc. Times like these show us who we really are...just people, human beings, trying to survive in an uncertain, highly complicated world. The key is to survive it all, no matter what the outcome is, and know that this too is another lesson in this thing called life.

The Creator/God is just that...the Creator/God of all things and knows the ins and outs of this situation.

Wishing Ashley, you and your family absolute peace most of all.

 

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