Ashley's Story

She will leave fingerprints all over your heart


Questions and Answers

So many people have asked questions over the last couple of days. Some I can answer, some I just don't have the answers to. I'm going to do my best. A couple of them are easy and so I will start with those. Its gonna be a long post. I'm just warning you.

1. Have we posted the room number yet?

Yes. But I don't mind posting it again in case you need it and happened to miss it. The room number is 6472.

2. What is the address I am staying at?

I am staying in Ashley's room with her. I always do. I have never left her alone for even one night in the hospital since having the orders from our family court judge in my hand back in August of 05. The address is:

Nebraska Medical Center
Ashley Adams #6472
42nd and Dewey
Omaha, NE

3. What size is Ashley wearing these days?

Ash is mainly in a 3T, although I prefer a 4T for her jammies to give her more room for me to access her line for labs and meds while she is sleeping.

4. Is CMV common?

Extremely. Although I was hopeful my baby would never test positive. Most of us probably have it, but are strong enough for it to never manifest symptoms. It is extremely common in the HIV and Transplant communities because of their weakened immune systems. Its not something you want to test positive for if you happen to be in those communities because of the potential harm it can cause you while you try and fight the virus. It can be very dangerous. You are welcome to google it. The information you will find is frightening which is precisely why it took us a day to absorb it all. In all honesty, it scares me for her. It really and truly does.

5. Are they treating her with Gancyclovir?

Yes. I am afraid they are. This is the most successful and most common drug used to treat CMV in these patients. It has a whole host of complications and it is also very, very frightening. It can cause life threatening blood disorders, gastro intestinal perforation(exactly what we DON"T need to happen to her fragile bowel), multiple organ failure, pancreatitus, and sepsis. Just to name a few. Ash is struggling with the infusions. Fever, irritability, head aches, tremors, etc. Most of CNS side effects that are listed. Its not easy on her. Around here though, it just seems like "old hat". I think mainly that is because the staff is so used to treating the patients with it and maybe a little because its not their child having to have it. I mean NO, ABSOLUTELY NO disrespect in saying that. Its just the truth. Its a whole different story when its your own child and not just your job. Our nursing staff are some of my very closet friends and I appreciate them more than they will ever know.

Our hope is that she responds to this line of treatment without needing to try one of the other two even more harmful drugs.

6. Will we consider moving to Omaha?

No. We will not consider that, and I am not offended by this question. We have 3 children. All are equally loved, valued, and important to Dave and I. We have to make decisions that best benefit our entire family. It is awful that we have to be separated when Ashley is ill. Trust me. I understand that more than anyone, but it is what we have to do. I would never place Ashley's life in jeopardy by refusing to come when she needs to be here, but I would also not place any more stress on Blake and Allison by forcing them to leave their home. Moving my children at 13 and 10 away from all they know and love would not benefit them. It would only hurt them and I'm not willing to hurt them like that. Its what works best for our family and to be honest I have not met that many families who have relocated the entire family to the transplant center. There are some that do. Its a very valid question.

7. What are the dangers to Ashley from this virus?

Well, this answer could take all day. I can't go into all of them because I myself am still learning them. Again, if you are interested you are welcome to google. The virus can disseminate throughout her body. She could become very, very ill. It could go to the eyes and cause blindness. It could travel to the heart, the lungs, the kidneys, basically all the vital organs and each one has their own host of problems associated with it. BUT, we could knock it out in the next month and she could be fine. That's what were going for.

8. How successful is bowel transplant?

Well, what is your definition of success? Transplantation of her bowel did not cure Ashely Kate. It "fixed" her liver disease, and short gut syndrome, but basically you trade one set of illness for another full set. Time. Its the gift of time. I think they like to promote it as the "gift of life" but I don't really agree. I have watched far too many of my precious friends bury their babies and they would argue that it is not the gift of life. The transplant gave them time with their children that without it they may not have had.

Statistically they say 80% survive one year, and 50-60% make it to five years. Those statistics don't mean anything if your child is one of those who don't make it. Praise God, He has given Ashley Kate 2 years so far. It is my hope and my prayer that He gives her a long and full life, but I don't know that He will.

Bowel transplant is the newest type(the first successful ones being done in the 1990's although they began trying in 1966 with "dismal" results well into the 1980's), it is one of the most difficult, and it is still in the "perfecting" stages. It is still the least performed transplant with the highest rejection rates and lowest graft survival rates. At this time the results are improving each year, but still are inferior to all other transplants.

9. Would we do it again?

Yes. I value her life. It is precious and sweet. She has more joy in her eyes than any other person I have ever met and I will fight for her life until the Lord Himself decides it is time to take her. Nothing we choose for her will prolong her life one single minute past the last breath He has ordained for our daughter to breath.

10. This morning as I cried I was asked, "I thought you were one of "those" people who believed in a higher power?"

Where do I start? I am one of "those" people and my heart is broken that you are not. That was my first thought. It still breaks me each time I realize that there really are people in this world who do not believe. Most of us surround ourselves with other believers and I too often assume that everyone I meet knows Christ. Has faith in God. Knows Bible stories. Prays. Its not true.

Just because I hurt over the situations my daughter endures and just because I have those days when I can't keep the tears from flowing freely does not mean that I have lost my faith. I don't understand why God doesn't just "fix" all of this. I fully believe that He could at any time. I also believe that He has a plan, and He never promised me that His plan was going to make sense to me or be easy for me. He doesn't owe me that. I can't make Him heal Ashley. I can ask Him to, but He will be the One who ultimately decides. I will be the first to share with you that there are times in the last 3 years when I have NOT liked His plan. There have been times when I have yelled, "You can create a world, you can control the waves, you can do anything, I KNOW you can heal my daughter." It still doesn't shake my faith in Him. I believe. I can't explain to you why, I just know that He is God. I know that He is real. I will never not believe. There will be times when He and I are at odds because I am human and unrighteous and He is God and He is holy. I don't have to agree, I do have to accept and believe. He doesn't require my approval. He does require my repentance.

I hope I have answered at least a few of your questions. Honestly, I will take those easy ones on any day. Giving you an address or a size is not difficult. Some of your questions I just can't tackle. I don't have the knowledge to even try. The ones I have attempted to answer are done to the best of my ability. I don't pretend to know all the answers. Especially on this journey with transplant. I am learning every single day.

Lastly I will answer this question.

Do I need anything from Target?

Well, who doesn't right? Just kidding. I do need a couple of items, but they are a little higher priced than shampoo and I would need to send my debit card with someone because I don't have a lot of cash on me. If anyone is going to be in this area and would like to take my card to Target to pick up the items for us it would be greatly appreciated.

As always you have my heart. You have my appreciation and my gratitude. Your prayers are precious to us and to her life. I fully believe each one of you are making a difference in the life of our sweet baby and in our family. I love you guys for sticking with us. Its been a long 3 years, but I wouldn't trade the joy for anything in this world. May God bless you for loving on complete strangers. You truly have been His hand and feet.


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