Ashley's Story

She will leave fingerprints all over your heart

9/30/2007

Shakey Ground

I am going to do my very best to explain where Ashley's health stands today. It is a little confusing, and a little frightening, and a little overwhelming.

Ashley's bowel is in a dangerous place. The CT scans yesterday showed some light on to part of her condition. I have shared with you already that Ash's abdomen is very, very distended. Her bowel is shut down and is no longer allowing fluids, stool, etc, to empty into her ostomy. Why has this happened? Is it because of injury? rejection? infection? This morning this is what we know:

There are bacteria that have embedded themselves into the walls of Ashley's transplanted bowel. The bacteria are going through their normal life cycles while in those walls(although it is not normal for them to be there. I hope I am making sense) and are causing air or pockets of gas to form in the actual walls(the tissue) of her intestine. What does this mean? She is in a very dangerous place. One of three things will happen.

1. This is the path that we pray we travel. Her body along with the antibiotics we have started could attack and kill the bacteria allowing the bowel to heal and in time(we have no idea how long) return to normal function only causing the discomfort that she is in at this time. We truly hope that this is what happens. It will be the safest outcome for her.

2. The bacteria could cause the bowel to necroses(or die) resulting in a resection of the transplanted bowel(meaning that we remove the dead sections of the organ and hope the remaining will function). Essentially she could be faced with the exact same disease that she suffered when she was born called NEC (necrotising entero colitis). This is an extremely dangerous condition and many children die from it. As painful as that is to share it is a fact. Ashley survived the disease once and I believe God could bring her through it again if He so chooses.

3. The final possibility of her condition is that the pockets of air could rupture the walls of the intestine( a perforation) causing the content of the bowel to leak out into her abdominal cavity. This is extremely dangerous and would more than likely spread a toxic infection throughout her entire system. We then would be battling a dangerous case of sepsis.

Ashley's doctor was very honest with me this morning. She fully expects that Ash could deteriorate and become very, very ill in the upcoming days to weeks. At this time Ashley is uncomfortable and exhausted, but she continues to breath on her own and maintain good numbers all across her monitors. Her blood pressure is stable. For these things we are grateful. They do expect these things to change as the condition plays out. We do stand on very shaky and unsure ground. No one knows (except the Father) what will take place in Ashley's body.

The reality of transplant life is that it is not a cure for our children. It is a means to give them life and to give us time. God has blessed us with two of the most amazing and precious years with our daughter. He could bless us with two more and then two more and then two more, but He also may not choose to do that. I know that, but it does not make me wish for her not to be here with us. We were created with the desire to live and that is what I desire for my baby. Dave and I have always known that the truth be told our sweet Ashley Kate will probably not grow up to marry and have a family of her own. She may only be with us for a short period of time. Our goal as her parents is to give her every opportunity to live and to laugh and to be loved. We will continue to do that. I kiss her and I hold her and I sing to her and I pray for her. I want for her to be made whole and to come back home to our family. That is my desire for her life, and He already knows the desires of my heart.


Your prayers for our baby and our family during this time are so appreciated. It is difficult to find ourselves back in this position. I have moved into her room in the PICU and I will stay here with her until we are allowed to go home. Thank you for loving a tiny pickle who came into this world and stole her mommy and daddy's hearts. We love her more than I could ever explain. Please pray for Dave. He longs to hold her and to make her hurts disappear. That's just the daddy in him and he is hurting for her today. I am still numb from all that has happened this morning and for now I just wait being careful not take a moment of her life for granted. We love you guys. Trish

Long night

Ashley rested for approximately ten minutes the entire night. This makes the 3rd night in a row she has not gotten any sleep. Insomnia is miserable and her little eyes tell us how exhausted she is. Around 3 the resident came in to let me know that there was talk of taking her to the OR today to "look around" inside of her. Her stomach is so distended and the intestine is locked down with no fluid exiting only building. The CT scan revealed no perforations to the bowel, but again it showed HUGE loops of dilated bowel full of fluid. I have no idea if we are or aren't going into surgery today. I will let you know if it actually happens. I questioned the resident to make sure that I understood what she was telling me. She said the fellow and attending were discussing the possibility. I'm not sure why our conversation took place at 3 in the morning but it did. They also decided to give Ash some blood at that time. Her hemoglobin had dropped from 11 to 7. We are not sure why. Along with the blood she received a couple of saline and albumin bolus' in an attempt to rehydrate her and to get her kidneys to kick back in. So far she has made no urine this morning.

I will attempt to answer a couple of question that have been asked the last few days. Ashley has not been sedated at all. In fact we have used no narcotics for her outside of the anesthesia they gave her during the 2 trips to the OR last week. Everyone(her doctors) feel like Ashley probably picked up a virus that caused her system to become weak and at that time she slipped in to rejection. Generally you don't go into rejection and then it lead to a virus. I think I understood that correctly. Someone else asked why I didn't name the drug that causes Ash so many problems. I have several reasons for that, but the main one being that I have learned over the course of Ashley's life that people are extremely defensive about taking certain medications. I in no way want to debate the issue with anyone. It may be a drug that works for you, but I know what it does to Ash and for that reason I don't like it. Many, many people feel as though this is a miracle drug that has "saved" them, and I respect that. Unfortunately there is another side to taking this medication and it truly robs your quality of life in many, many ways. So out of respect for those who like and support it I do not wish to debate. I hope that makes sense.

The team is beginning to round so as soon as any decisions are made I will share them with you. As always you are appreciated and loved. Thank you for caring. Trish

SHHHH...

Now I lay me down to sleep... I pray the Lord my soul to keep.

Such beautiful words because I know that He is keeping her close to Him tonight. Her eyes have finally closed and her whimpering has ceased. I am so thankful for this moment because her body desperately needs this.

I think she's beautiful. Good night baby gherkin. Mom loves you.

9/29/2007

Rambling



Today Ash went downstairs for 2 CT scans. The first was around 3:30 and we just returned from the second. Her bowel is not moving so the contrast did not work its way through causing us to have to repeat the test. I'm not sure that the second was going to be any different because basically nothing changed in the hours in between. In a way I would like it to show us why the bowel is so ill, but in another way I don't want anything to be wrong. I guess we will wait and see what the report tells us. I'm really proud of our sweet girl. She is being so good. She didn't even fuss except for when we had to pick her up and move her onto the table. Her tummy is still so sore she hates to have to move.

Other than the scans not much happened here in Omaha today. Ash has insomnia and has not been able to sleep. Her eyes just kind of dart around the room for most of the night. She did rest for a couple of hours this morning, but other than that she has been up for most of the day. As I stood next to her bed she reached out and touched my fingers with her tiny hands for brief moments. It made my heart smile. Even though she is the one who is feeling so yucky it was almost as if she were tying to comfort me. I just love this sweet baby.

Back home in Longview Dave was busy putting up Blake's birthday gift. Oh, I wish I could be there to see the look on his face. Its going to be great. Blake is spending the weekend at a friends house and has no idea what his dad and graypa worked on all day. Hopefully Dave will remember to take pictures for me this year and can post the surprise next week. We decided to postpone his birthday party. Dave just can't pull it off by himself. Its a little too much to handle right now. Allie had a soccer game today and scored her first goal of the season. Dave called to tell me right after it happened. We were so proud! He told me she played her best game ever this afternoon and that is saying a lot. I wish I could have been there. After winning the game her grandma took her to the mall and Al said they "shopped till they dropped". The she said, "She really spoils me!" I just laughed at that girl. I miss her so much. She called and asked me to "talk some sense into her Dad" because she thinks she should get to sleep in my spot tonight and watch a movie. I bet he gives in and lets her.

The weekends are so quiet around the hospital and that makes the days drag on and on. Ash and I missed being home and are hoping to be told we can go there soon. I can't wait to be there to tuck those kids into bed again. Its my favorite time of day. Well I feel the need for a diet coke coming on. There's just something about hospitals that make me "need" one. Its a nasty little habit, but I guess it helps me cope.

Thanks for your encouraging words and for spreading the requests for prayer to your families and friends. You have no idea how much it means to me. I know God is listening and is still allowing His plan to unfold in our lives. Have a peaceful night and may He bless you. Trish

If Only He Would

Ash is not good this morning. Actually she hasn't been good since her procedure yesterday. She is very, very weak and she doesn't look good. Her skin is yellowing and her bilirubin is climbing. Her abdomen is hard and huge and she has had no output since the scope began at 2:oo yesterday. Ashley hurts and we are all concerned.

Her surgeon just popped in to check and see if she was any better and since she is not then she has ordered a CT scan of the abdomen. Ashley has also had a jump in her white blood cells this morning which is an indicator of infection. The doctor said it is very possible that when the scope went in yesterday that some bacteria from inside the bowel may have passed into her blood stream. Always a scary situation. Overall Ash is getting sicker and sicker. Her organs are not happy. At this time she is stable. She is breathing well despite her cough and congestion and her heart rate and respiration rates are ok(not great, but ok). I am thankful for these things today.

She has no energy, but she still stays awake. She looks so very tired and scared. It is a very sad and lonely day in our room. I continue to kiss her and sing to her and just let her know that I am close to her. She is frail and tiny and weak.

I've been thinking a lot about the passage in the Bible that tells of the day when Jesus was in a crowd of people and a women reached out to touch the hem of His garment. Immediately He knew He had been touched and He asked who had touched Him. Do you remember that story? It was her faith that comes to mind. She knew that if she could just touch Him it would be enough to make her whole. I find myself wishing that I could just get a hold of His hem, and then wondering if my faith would be strong enough to make my Ashley whole. I prayed a lot last night and cried as I asked for my faith and my belief to be more real. So real that I never lay awake and wonder if I have enough for her. It is a struggle. To have that kind of faith to know that if He would make her whole that He could. I need that faith today. I finally stopped praying and just held my little Bible as close to my heart as I could last night and then eventually drifted off to sleep. I don't know if it helped, but it made me feel closer to Him in that moment and I didn't know what else to do.

My heart is hurt and it seems to hurt more and more everyday. I am desperate to see her be made whole, and I am desperate to have enough faith to make it so. If only He would.

9/28/2007

Planned

"I know things did not go the way we had planned, but shes still with us and thats more than it could have been." Dave met a mom tonight who lost her child two months ago. In that brief moment he began to count how very blessed we are.

Its not the way we had planned. Its better. For years and years I literally dreamed of this child. I would wake in the mornings longing for her and missing her. I would imagine her and what she would add to our lives. I made plans for our family. I envisioned Blake and Allie loving her. I asked for her. I wanted her. I needed her.

Not one time did I ever picture our sweet baby struggling. The thought never crossed my mind. Sick? No. Fragile? No. NICU? No. Terminal Illness? No. Transplant? No. PICU? No. Not only did I never imagine any of these things, but I also never imagined this:

A renewed faith.

A joy that is indescribable.

A community of support surrounding us from all across the country.

A deeper appreciation for my husband.

A connection to other mommy's who walk this path.

A love so deep that I would give my all for.

A beauty so sweet that it brings tears to my eyes.

A stack of miracles.

A relationship with the Father that could ease the pain of loss and give me hope.


No, Ashley's life is not going the way we had planned. It is going the way that He has planned. Although there are days that hurt , there are also days that don't. I wouldn't change one thing that we have done over the past two years. It has all been worth it. To know my sweet Ashley Kate even if it had only been for a moment would have been worth it. I would walk through this and much, much more for any one of my children if that is what it took to be given the opportunity to love them. I don't feel sorry for us. I feel blessed.

It has been a rough day for Ash. She is tiny and weak today. She struggles as her body sorts out this episode of rejection and all the complications of it. Her bilirubin is climbing and her eyes have a yellow tint in the corners. I kiss her cheeks. I rub her feet. I lay my head next to her and pray as the tears fall from my eyes. I love this child and I love being her mom. It didn't go the way we had planned. It is much sweeter.

The good, the bad, the ugly...

or whatever you want to call it.

The Good:

I had the opportunity to rock this precious baby in my arms this morning. I kissed her little hands and I kissed her forehead(my absolute favorite place to kiss my children). I smelled her hair and I prayed over her body. I allowed myself to just enjoy being close to her again. I saw her smile a very tiny, fleeting grin when I sneezed and it made my heart smile. She loves to hear her daddy pretend to sneeze over and over again and it must have reminded her of the sneezing game they play. That is the good I have found today.


The Bad:

Ashley's bowel is of course in some level of rejection. Still an undetermined degree. This morning her labs show that her liver is in a little bit of distress as well. As crazy as this may sound, I hadn't even consider the rejection of both organs. I asked if it were possible for her to reject both at the same time, and they agreed that they too thought that it looked like a possibility based on the morning labs. So are we actually rejecting both organs? We do not know for sure, but if her numbers continue climbing then we will schedule a liver biopsy next week.

The GI doctor doing her scope did not have encouraging things to say about his view of the bowel this afternoon. He actually said "it looks like rejection, but I am not a pathologist." The surgeon came in to view the bowel on the screen during the scope and she felt like she saw some healthy tissue still there. That part was a little encouraging.

The Ugly:

Based on what the surgeon saw on the screen she is thinking about going ahead with Ashley's take down procedure while we are here. Of course Ash will have to recover from this bout of infection and rejection first, but if she can recover before the end of October then she thinks it might be in her best interest to go ahead. The ileostomy(loop of bowel on the outside of Ashleys abdomen) is very prolapsed and doesn't look too good. She is also concerned about a loop of bowel she saw that is turned underneath the skin which could pose serious problems with further prolapse. This is ugly. The time of year is not optimal for Ash to be in the hospital. We are just approaching flu season and virus' run rampant in the halls during the winter. This could be ugly, not to mention the mental battle we will go through as we put Ash through such a procedure. We just weren't prepared for that yet, but if it is in her best interest then of course we would agree.


There are days in this life that are more trying than others and it is during those times that I try my hardest to find things to be thankful for. None of this situation is under my control. I can't change a moment of it. I can only control my reaction to it. My hope and my prayer is that our Ashley will recover and her health will be restored. I would love to have her home for the holiday season for the first time in her life. My mind is trying to wrap itself around the possibility of a long hospital stay. I miss my kids. I miss Dave I miss normal life. I miss a lot of things, but I am still blessed even if a tear or two happens to fall from my eyes. He knows and I really think He understands.

Reminders

We will be having another scope of Ashley's bowel done this afternoon. Still trying to determine if, when, and to what degree the bowel has been affected by this "illness"(rejection/virus). No one really knows what has happened or what is going on. The important thing to me is that everyone is trying to figure it out. Ashley continues to show signs and symptoms of rejection of the small intestine. Things like high stool output (1700cc's or more in a 24 hour period) this is an indication of rejection as well as sluffing off of mucosa and tissue that was seen in her ostomy bag this morning. Obviously these things concern me and cause me to be a little frightened about the course of action that will be taken(including the prescribing of difficult drugs for Ashley). She no longer has fever, nausea, vomiting, episodes of rash or other indications of viral infection. She does have a nasty cough and is receiving CPT from respiratory therapy to help her with that. Although she is still struggling I am reminded of those things that have been resolved for now and I am thankful.

As her mommy of course I am emotional. Of course I struggle with things that are done to or for her. I want the best possible life for her. Of course I have questions and would like explanations. I think that any parent would feel the same way in this situation. This is not an easy path to walk. It is difficult at times, but it is also blessed. Even though I may struggle and disagree it does not mean that I have forgotten all the blessings that have been scattered across this path. I do believe we are in the right place for Ashley, but I also believe that a responsible parent would do everything in their power to be informed and to understand the course in which her recovery will go. It does not mean that because I question decisions made that I dislike our team of professionals. What it does mean is that we will talk it out, work on it, and come to an agreement of some type. Although it is not always easy to get to that point, we will work together for the best interest of Ashley Kate.


To be away from home again and to return to the very same room where we fought through so many uncertain days and nights is tough. I won't pretend that it is not. If that offends anyone out there reading this journal than I apologize, but I would remind you that no one is forcing you to read along. You of course are welcome, but if at some point you decide you don't want to be here anymore you certainly have that right and I would do nothing but thank you for your time and prayers spent here. I just get the feeling that some of our readers are very hostile towards me or us or our family and I thought those of you who are should know that we realize you disagree with our decisions, our emotions, and our life style.

On the other hand I am reminded that after a long night of struggling and searching that God is still with me while I am in Omaha and He knows all about each and every difficult day. Ashley and I are here for now and He knows exactly where we are. I can be assured that He is not scratching His head wondering what to do next. He knows what today and tomorrow hold for our family and for our daughter.

Again I am reminded of how many people love and pray for our daughter daily and it humbles me. You are more than loved and appreciated. Thank you again for choosing to be here today. I will let you know if I find out anything more about the rejection of her bowel. For now we continue to wait and pray. God bless you my friends. Trish

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.

He makes me Smile


If you happened to whisper a prayer over Ashely Kate's DVD player this morning then I want to say thank you. Sometimes God just makes me smile. Actually I am laughing. A sporadic, miraculous healing is taking place. I continued to beat and plead with this silly contraption to just let her watch one episode and out of no where it started turning the disc round and round. I have no idea how long it will last because for some reason it is freezing up and then playing then freezing up again, but for now this baby that you see is a happy girl even if you can't tell by the look on her face.

Thanks God for caring about the little things in our lives.

Mail time:

Several people have inquired about a mailing address. I hesitate to post one because I don't want you to think that you need to do anything more than you already do for us. Your prayers are more than enough. I have also been told not to rob another of His blessing so I will post a couple of options for you.

In Nebraska:

Ashley Adams
Patient Mail
Room 5211 PICU
P.O. Box 6159
Omaha, NE 68106-0159

Close to Home:

Ashley Adams
101-B Woodbine Place
Longview, TX 75601

(this is actually our office address, but the mail will get to Ash. I just don't feel comfortable placing our home address on line.)

Early Rounds

Rounds took place early this morning (maybe to make up for yesterday's late ones?), and the last words of our surgeon? "I'm encouraged". It doesn't get much better than that!

She is convinced Ashely came in suffering with rejection. Based on the slides from her biopsies and her symptoms she is positive about that. What they are not positive about is if it has just slowed and stalled waiting to flare up again or if it is over. They scheduled another biopsy on Friday afternoon and told me we need to be careful to make sure we don't miss anything. She continues to have a very high stool output since the bowel "came alive" and this is a classic symptom of rejection. The mystery rash remains a mystery, but she has not had an episode in two days. Her skin remain pink and healthy and intact. I am so thankful to be past that part. No more sluffing and oozing skin reduces her risk of infection.

Overall I feel very positive about where we are this morning. Ash is grumpy because her DVD player is on the brink and she can't watch Blue. I have shook it, hit it, talked to it and tried to get it to understand just how important it is that she get to watch Blue, but for some reason it decided to "die" last night and refuses to play. To see her frustrated and grumpy are actually good things. She is starting to feel better and become opinionated again. She is kicking off her blankets, pulling off her socks and turning her head away from anyone who comes in to examine her. To be honest she is being down right rude, but who can blame her. She still bares the marks of the multiple "sticks" she endured last week and I don't think she is over it yet.

I asked about the time line for starting feeds again. I know that in order to pack our bag and head home we must have her back on feeds. I think they wanted to laugh at me when I posed the question. "Not today, and when we do start we will start back at 5 mls per hour." Remember the thimble full posting of last fall? That's the position we will find ourselves in once again.

Can I just share with you how thankful I am for this team of doctors? They have been used by the Father more than once to pull our Ashley Kate out of a tough spot. I appreciate their commitment to her. I appreciate their thoroughness. They are careful and deliberate checking all possibilities and not taking any chances. For those reasons I will be content to sit here and wait this one out. I am sure there must be a reason we are here. Although I would love to be home for Blake's birthday they are just not going for it.

Her chest x-ray shows some collapse of her left lung, but her fluid status is better making it much easier for her to breathe. The cultures are not conclusive this morning so we still aren't sure what is growing in there, but I am making her sit up today to try and hold off that pneumonia that would like to set in. She doesn't like me very much, but sometimes I just have to make her do what she doesn't like even if it is uncomfortable.

I just want to thank you again for keeping up with the pickle. It amazes me how faithfully some of you follow along. I know you are busy dealing with your own day to day struggles but yet you still take the time to pray over mine. It does not go unnoticed and I thank God for you and your faithfulness. Take care today. Trish

9/26/2007

Remembering...Lest we Forget




Remembering where we were a year ago at this hour. She was so tiny and so close to leaving us. God did and still does amazing things in her life and I sit in this room with my tiny gherkin remembering just how far she has come. Amazing.

"Classic" Ashley

Our sweet girl's tummy has shrunk enough to allow her to assume the "Classic" Ashley pose. She has been sleeping like this since she was tiny. How good it did my heart to see that her little leg was able to cross over that tummy without causing her too much discomfort. Everyone comments on how funny she looks. She might as well be on vacation kicked back like this.

Rounds were made late, late in the day because the surgical team was tied up in surgery. They didn't have too much to share except to turn down my request to be home some time next week. The first thing they said was, "Uh, no. We don't think so."

"Even if she makes a complete recovery and looks great?" I asked.

The surgeon just shook her head and said, "I wouldn't expect it to happen that quickly."

"Just letting you know I'm thinking positive." was my reply.

We are still treating for rejection. The decision was made to keep her FK level(the anti rejection medicine) at a pretty high level so it doesn't flare up again. They did stop all of the other meds they had started because obviously they weren't doing their job. Since she came down with something in her chest while on those 3 anti biotics the infectious disease team wrote to discontinue them. They said that her sputum culture from yesterday was growing something and once they had identified it they will try and come up with something to treat it. They are also suspecting that she is coming down with pneumonia. I hope that is not the case, but her cough does sound pretty nasty. They didn't like the look of her x-ray. We will just have to wait and see if she gets better or worse in the next couple of days. She is off of oxygen at this moment and although she is sating at the lower end of the cut off she is doing it on her own with no support. She continues to struggle with high respiration's, but I think it is getting better. Her swelling is coming down and she is starting to pee. All of this is moving in the right direction.

I made her sit up a little today and she did not like me that much. Then I rocked her for a while and I loved that. She may not admit it, but once I began reading to her (the only book close enough for me to read to her was about weight loss, but she didn't care. I think she is going to be supportive of my endeavor. Although, I don't think my only choices for dinner are going to help me out. What should I choose? A bag of Doritos or a bag of popcorn to go with my diet coke?). She settled in and allowed me to rock her to sleep. Then I was able to kiss her over and over again and just enjoy the fact that she was still here with me.

She is really fussing this evening and although it is sad I think its a good sign to see her being so grumpy. She doesn't feel well, but at least she feels good enough to tell me all about it. I have no idea what the next few days or weeks will hold for us here, but I have no choice but to be thankful for each and every tiny step she takes.

Thanks for checking on our pickle today. Your prayers continue to carry us along. Trish

Bitter Sweet Blessing

How do I even begin to unfold all that my heart is holding on to today. I struggle as I try and work through the emotions. I have been thinking a lot about this day lately. It started a few weeks ago as I would be reminded of our sweet friend's anniversaries. One by one they came to pass and I would smile a smile of happiness and say a prayer of thanksgiving as they made it to the 1 year milestone. Happy, "healthy", and home. I would remind myself that we too were almost there. I began to count down the days and make the plans of how we would celebrate sweet Ashley Kate's anniversary knowing that whatever I decided on would become tradition for our family. While planning our celebration I could not forget the ones who were also approaching that 1 year anniversary and how my heart hurt each time I realized theirs would not be one of celebration but of heartache. How could I ensure that our sweet Ashley would never forget to remember the one who gave her so much?

The last two years have been painful for us. There is no denying how deeply our hearts have ached as our Ashley has fought for life. There have been many days when it felt as though I would not survive the pain of watching her struggle. I thought to myself, "Nothing could hurt more than this." To see her slipping farther and farther away from us was excruciating. I do not exaggerate when using that word. Then one year ago today, September 26, 2006, the telephone rang early in the morning and I learned that yes there is something more painful than watching your child suffer. Watching you child die. In the midst of the most unimaginable pain there was a family who was hurting more than I. There was a mommy whose heart ached with a pain deeper than mine. There was a mommy who knew what it felt like to watch your child teeter between life and death and during that hour she thought of me. She thought of my Ashley.

How do I explain how it feels to know that my child lives because hers did not. The emotions are so very complex. Bitter and sweet at the same time. I kiss my Ashley's forehead on her good days and on her bad, but this mommy will never kiss the sweet forehead of her child ever again. The joy I feel for my Ashley is mingled with the sting I feel for her.

A year later I look back over the many,many struggles (even now as I listen to her cry with each movement of her body we are in the middle of one), but I also have the privilege of looking back over the many, many joys. Many smiles. Many giggles. Many kisses. Many triumphs. Many gifts. All given to me because another mommy's heart was large enough to look past her pain and imagine mine. How do you say thank you for that? I hope that someday I will know.

I have no idea who gave us this gift, and the reality is that I may never know. Regardless of that detail I can say that I love her for thinking of me and my sweet Ashley Kate on what had to be the hardest day of her life. Forever I will be humbled. Forever I will be blessed. Forever I will be grateful. You gave us the gift of time and I pray that I never take that for granted. With all my love I thank you today and I pray for His peace to surround you as you remember your child. I have not forgotten. Bitter sweet was the gift you blessed me with. Bitter knowing how much you lost, but sweet because of how much you gave. May our God bless you.

Thinking Positive...Again

I love the newness I feel each morning. It seems as though the troubles of yesterday fade away for a moment as I begin to concentrate on all that could happen today. She could turn around today. She could breathe easier today. She could make lots and lots of urine today. She could rest well today. She could begin to heal from this setback today. She could smile today. It is full of possibility and I am clinging to all that she could do today.

After a very long and difficult night I pulled back her blankets this morning and I was thrilled to see that her distended tummy is smaller. It is softer and she is not guarded or grunting when I touch it. I am so happy. Her bowel is moving. Although she is doing what they like to call "dumping" (which basically means putting out too much through her ostomy) it is finally moving. That is a huge answer to prayer. I don't know about you, but I prayed with every breath last night that it might "wake up" and start to move. It is putting out a very dark, almost black fluid but it is putting out fluid. That is progress! I just know this is why her tummy is softer and smaller. She looks to be much more comfortable and my hope is that she might feel good enough to want me to hold her today. I miss her so much.

Her breathing is still very labored. The fluid on her chest is heavy and that makes it hard to breathe deep enough to maintain her oxygen. She continues to require about 2 liters of support, but if her kidneys will kick in to high gear then I believe she could breathe without it today. I told you I am feeling positive this morning.

Wouldn't it be amazing if she turned the corner and we were home soon. To be home in time for Blake's birthday would bless our hearts so very much. It could happen.

The team has not rounded yet this morning, but I wanted you to know that her bowel is doing SOMETHING and I know it is a result of much prayer. I just couldn't wait to share it with you.

I have so much on my heart today that I want to share, but I will wait until I have a quiet moment to compose my thoughts. More than anything I just wanted you to know how grateful I am for your continuous prayers. It is changing her life and making a difference in our family. Thank you. Trish

9/25/2007

Each and Every Breath

Ash is truly struggling for each and every breath tonight. I don't like the way she looks. She has too much fluid on her body making it so difficult to breath deeply and fill her lungs with the air she needs. She is working way too hard. The distention of her abdomen is just adding to the pressure that is being placed on her lungs. Her fluid has third spaced and she is very, very huge. We have her on two liters of oxygen trying to keep her saturation's up. I don't like where we seem to be headed. It is so, so scary.

Ash is exhausted from the struggle. I keep encouraging her to just breathe... breathe...breathe. Her breaths are shallow and her respiration's are way too high. She is fighting against the nasal cannula and the memory of what the next step is frightens me. This is the slippery slope I knew we would be standing on the minute we returned. Once we start to slide getting back to the top is so very difficult.

Something that comes so easy for me can be so difficult for her. That breaks my heart. I breathe and don't even give it a thought. She breathes and it takes every ounce of energy she has in her entire body. Why is it so tough?

The cough that Ash has developed has turned into congestion only making it more difficult for her to breathe. Even though she needs the oxygen to make breathing easier for her she doesn't understand and she doesn't want anything to do with it. We have been holding her arms and hands down for the last hour trying to make her keep it on but she still managed to pull it off twice. They are now asking for an order for restraints.

Dave has gone to bed. His plane leaves at 4 tomorrow morning. I hate it that his last image of Ash is going to be watching her struggle for breath. I know it only makes leaving more difficult. Although my heart smiled when he came around the corner this afternoon I will be glad for Blake and Al to have their dad home. They need to feel some sort of normalcy. They have been so great and so understanding. Tonight Al said, "If her body doesn't want those organs then just ask them to give her someone else's before you come home." Even after all we have talked about her heart is still a child's and it is innocent and doesn't understand the sacrifice that was made to give Ash a chance to live. If only it were that easy.

My prayer for Ash tonight is that her little lungs would fill with air. Her kidneys might kick in and begin to pull the extra fluid off her body, and that her bowel would wake up and start to work. I hope I'm not asking too much. He already knows exactly what she needs so I'm just going to "let my requests be known unto God". Thank you again for loving her enough to pray for her. I will never be able to repay each one of you for all you have done. Just know that my heart is grateful and will always be. Good night. Trish



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INDETERMINATE

What does that mean? It means they don't know what the biopsies show. They think they are "suspicious" for rejection. Mild and not severe. We are THANKFUL for that last phrase.

Currently they are treating her for rejection. The problem with that is the treatment for rejection may cause the virus or whatever else she has to become worse. Ashley is sick and that is all we know for sure.

Assuming nothing else changes(like line infection, sepsis, pnuemonia, all the other frightening things that lurk in ICU halls) we could be here for a week or possibly months. How do you plan for that one? I have no idea. I guess I will just take it a day at a time and when that becomes too overwhelming then I will take it a moment at a time.

She continues to be really uncomfortable because the treatment for rejection is to increase the levels of her anti-rejection drugs (FK) and to hit her hard with steroids. Her FK level is 5 times higher than it has ever been and she is getting steroid doses 50 times higher. This makes for a pretty "Grumpy Gherkin." She is so uncomfortable and that is the hardest thing for us to watch. She is grinding her teeth so much we are praying they do not break.

We are so grateful that at this time her organs appear to be safe and we are thankful that we are here in Omaha with this team caring for Ashley.

Some more "good" news. Dave left at 2:00 to head home but at 3:30 he popped back into our room. There was some kind of electrical problem in Memphis which caused a mess for air travel. Somehow it canceled Dave's flight to Dallas and there were not any other flights that would get him there in time for him to make his connecting flight home. So we get to have him here with us one more night.

Thank you for praying for our pickle. We don't take those prayers for granted.

Things are changing

Ash's blood pressure is too high.

Her oxygen sats are dropping. They want to put her on oxygen. For now I am just holding a little blow by in front of her nose to support her. Hopefully she will pop back up on her own.

She developed a cough yesterday and the congestion is much worse today.

We took a chest x-ray and it looks pretty good.

Her respirations are too high and she is breathing way too shallow.

Her kidneys have shut down(again). She is making very little urine even with the help of lasix. We think this is due to a VERY high FK level.

She is fluid overloaded making it difficult for her to breathe. Until her kidneys can pee off some of the fluid we are stuck in a hard place.

She is receiving and IVIG. As far as I can figure out that is some type of immunoglobulin to support her immune system while she is down. It is considered a blood product and is infused in much the same way.

I have no idea if anyone will talk to us about the results of the biopsies today. They did not know in rounds and so the likely hood of finding out today is pretty slim. Obviously that is disappointing.

Dave has left for the airport and so now it is just us girls.

I know our families are getting frustrated about the lack of information, but the truth is that we just don't know anything. I promise as soon as I know they will know and so will everyone else.

Gaining Perspective

I find myself searching for a lot of things this week. Searching for answers, for reasons, for explanations. This morning as I woke I realized that all of that searching is not going to do any good. Even if I find those things it will not change where we are today. I woke with positive feelings again this morning. It seems that each day I start fresh with hope and an expectation that all of this could turn around and we could be headed home soon.

As I search for the meaning or the purpose behind this set of circumstances I am gaining perspective. Today I will concentrate on all of the good that surrounds me and I will be thankful for all that has been given. The first thing that comes to mind is this; Ashley Kate has organs. A year ago today she did not. She was slipping away from us a little more each day and we were powerless to stop it. Tomorrow we will not celebrate her 1 year anniversary in the way that I had hoped we would. The plans that we had made for the balloons, the cake, the pictures will not take place, but we will still remember. We will remember what a gift she was given. We will remember the precious family who will grieve the loss of their child on that 1 year anniversary. We will remember to be grateful. We will remember not to take one moment of her life for granted.

The results of the biopsies will lead us in a direction. I have no idea if that direction will be good or bad, but at least we will know. I still find myself holding out hope that this will be a short stay and that Ash and I will return home soon. If that is not the case then I hope that I will allow myself to learn, to grow, and to be used in whatever ways He has planned.

Ash struggled for most of the night. I went to the room and slept, but Dave tells me how heartbreaking it was to listen to her struggle. She is very uncomfortable. Her little body is no longer little. Her abdomen is very, very distended because of the illness in her bowel and it is causing her a lot of discomfort. She is not resting well and is very fussy and sad. She will finish the third dose of steroid(I don't remember if I told you they were treating her rejection with 3 very large doses or not) and this drug causes her to feel miserable. We have also raised her FK level(the anti-rejection medicine) very, very high to try and protect the remaining bowel from further rejection. This too makes her feel miserable. Overall she aches and doesn't understand what has happened. I wish she understood. I kiss her head and hold hands as I whisper to her how much I love her, but that cannot take away her pain. We are helpless.

As soon as we know anything about the results of her biopsies we will share it with you. At this point we just wait and pray. Trish

9/24/2007

The Separation

Dave and I had a discussion while Ash was in the OR. With big tears in my eyes I shared with him that its not so much the waiting that is difficult for me. Its the separation. The moment they ask me to go to the waiting room and they take our baby in the opposite direction. That's the part that rips into me. The separation from our baby, our little girl, our sweet Ashley. You would think that in time it should get easier, but I can tell you from experience that it does not. It is not natural to watch them go down the halls of a hospital time and time again. It is not normal to know that a tube is being inserted into their throats to breathe for them. It is not easy to have no say about who and what is touching them. The separation from her gets me each and every time. My prayer is always the same, "Please hold her close to You and please keep her safe while she is away." That's the best way I know to leave her. Resting in His hands.

We are now back in our room and Ash is breathing on her own. For a while we thought she might require some oxygen support, but she perked up and although her oxygen saturation's are not as high as before the procedure she is holding her own. She is coughing and her throat is sore from the scope, but she looks pretty good. Her stomach is more swollen and more distended than before and it is causing her some discomfort. The results of the biopsies will not be shared with us until sometime tomorrow.

Dave thinks we hit the jackpot today. Its always a good day when you get good nurses. Our nursing care today and tonight is better than we could have hoped had we put in our requests. I love it when that happens. God has really blessed me with some great friends along the way and it makes it so much easier to be here knowing that I have those girls around. By the way, I want to say thanks to Heather for the awesome dinner, the Target run, and the surprise. It made us smile. You are so appreciated.

The unknown is always difficult. How much of her bowel has been affected? How long will she be sick? What is going to happen? When will be able to go home? All of these questions and many more are continuously on my mind. I wish I knew the answers, but of course I do not. I know that God does know and even though it brings me comfort I still would like to stomp my feet and demand to know. I realize that sounds ugly, but if I could just know the plan. I think I function better when I know what I am up against. I am quite sure this is one of the lessons He is still trying to teach me. I have such a long way to go.

I am trying not to think about Dave leaving tomorrow. I am trying not to think about missing my son's 12th birthday. I am trying not to think about not being there to lay next to Al as she says her prayers. I am trying not to think too much right now. Sometimes you just need to be still and thats what I am planning for tonight and tomorrow. I want to and need to be still enough to listen.

Thank you so much for being here and walking along side of us. Your prayers are so important to us. I know He is listening. Thank you. Trish

They just took her back in the OR (5:30).

We should be hearing from them in 45min to 1 hour.

Still Waiting

I just wanted you all to know that we are still waiting for our turn in the OR. They seem to be very busy today, which makes me sad knowing that so many people are sick or hurting.

Ash is not feeling very well today, but her daddy has managed to juggle all of her tubes and wires enough to rock her to sleep. What a gift! She is snuggled up on his lap and looks more relaxed than she has all day. She is getting a transfusion of platelets right now and her kidney function has stalled once again. We are not sure what is going on inside of her body to cause all of this.

I just didn't want anyone to worry about not hearing from us yet. We will let you all know something as soon as we know something. Your continued prayers touch our hearts and we are grateful. Trish

Back to the OR

Morning rounds bring us news we were hoping not to hear. This morning they are leaning towards rejection. They really feel that it is because of her rejecting her bowel that she has become so sick, and that it probably led this mystery virus. They have scheduled her to be in the OR at 1:30 today to do a very thorough scope of her upper and lower bowel to see how much damage has been done. She will be intubated during the procedure and we pray that she returns to us off of the vent. She woke with a cough and congestion in her chest this morning and I am sure it is because she has been flat on her back for over a week. Hopefully this will not cause her difficulty coming off after the procedure.

I had been hoping to somehow be told that we were on our way home. I have been so positive this morning really believing that all could be fine and that she is over the worst. I REALLY wanted to fly home with Dave tomorrow. My heart is disappointed. I am trying not to cry. I was told again that we need to be prepared to stay for a while. This is the part that hurts the most. Being away from the kids and the five of us being separated again is so hard on all of us. Ash loves her daddy and she loves Blake and Allie and she NEEDS them. I hate it for her that they will not be close.

Emotional state of mind today? Very, very fragile. I'm trying, but it is so tough this morning. I will post once we have returned from the OR. Thanks for praying. Trish

9/23/2007

This smile...

brings us so much joy! Its been one whole week since we have seen it and a world without it just isn't the same. I miss her personality. Dave and I laughed a lot, smiled a lot, and cried a little this afternoon as we looked through her pictures. She is a happy child that fills our home with joy.

Dave has crawled into the crib with her. He just wants to be close and cuddle up with her. We miss holding her. She aches to much to picked up so we are settling for laying our heads next to her on the pillow. I think she looks a little better tonight. Her eyes are open and she is watching Blue. She actually turned her head in response to her nurse tonight and that was the first time she had acted like she was even aware anyone else was here. Her heart rate is down and her respirations are too. She sounds a little coarse and junky in her lungs, but continues to breathe room air. She has no fever at this time and no evidence of her rash showing.

She did receive another blood transfusion this evening and they started a round of steroids to try and settle whatever has made her so sick. We also began giving her anti-rejection meds tonight so this makes us think the team is starting to lean more towards rejection as opposed to something viral. We will hopefully know more in the morning after rounds.

My heart feels more at peace tonight than it did last night. I think the stress and the shock of so much happening to her so quickly was just too much. I am really hoping to wake up and be told that she is fine and we are all clear to leave. That is still my hope. We want Ash back home and living life again. We want to hear her laugh and giggle. We want to see her ornery streak return. We want to look at that twinkle in her eyes. We want life to return to that beautiful state of "normal" that she had achieved. I believe it can. I believe God can do it again in her life.

I did speak with Blake and Allie tonight about not coming home with Ash just yet. I could tell they were disappointed, but they were being so brave. I am so proud of who they are. Their little hearts have held big burdens before and although it breaks mine to know that I trust that they can do it again. I shared with Blake in a little more detail than Al about what we have found out so far. He is older and stronger than Allie and I want him to feel as though we trust him and are not hiding things from him. They are such incredible people and I miss them so very much.

I'm really tired tonight. I tried to rest some this afternoon, but couldn't fall asleep. There are lots of questions running through my mind and turning it off isn't an easy thing to do. I am hoping to sleep tonight. Thank you for praying today and for asking others to pray for her too. I can feel that you are praying and I am so thankful.

Ashley's Fundraising Campaign

Thank you so much for your comments and your prayers. We find ourselves reading the comments on a regular basis. We draw much strength from your prayers and encouraging words. Several have asked about donating to Ash. She does have a fund set up through the Children's Organ Transplant Association which can be accessed by clicking here.

How to Pray

This morning we were hoping for clarity, for answers, for direction, but still we have none. I will do my best to explain what we think is happening in the areas that we are able too. I ask that you read this post with clarity and try not to panic (I say this mostly for my family because I know how frightened they are). This is what we know.

Ashley's bowel shows evidence of the mucosa(the inside lining which serves as a protective barrier) has suffered a rejection episode at some point. To what degree we are unsure, but on the cellular level there is proof. There were 6 biopsies taken. The majority of the biopsies taken on the proximal end(the end closer to the stomach) showed evidence of the sluffing. The biopsies were only done through her stoma(which is the loop of bowel that is on the outside of her abdomen) and they only went in as deep as 10 to 20 cm. How much more of the bowel has suffered this same sluffing from being in rejection? No one knows at this point. In the future, when Ashley is more stable, we will more than likely do an endoscope which will allow biopsies of the upper part of the intestine to be taken and to be looked at. We will have more answers at that time. If only small areas of her bowel were affected then it is possible that the remaining bowel will still function, but it is a proven fact that unlike the liver the affected bowel is not able to be repaired or to recover. The best case scenario is that only a very small area suffered the episode of rejection and that she will still have enough bowel to absorb nutrition and grow. Worst case scenario, we lose the organ and she will be re - listed for transplant. I emphasize that we are not there yet, but I mention it so you might pray against it. She is not currently in an episode of rejection, but her bowel is no longer working because of the "mystery" infection she is currently suffering from.

Currently her breathing status is stable. We are praying it stays this way. We have been "prepared" for the fact that she may be headed toward intubation if she wears out from fighting the infection or if her lungs fill with fluid or infection. Her heart rate remains very high(170-190) as her body fights. Her respiration's remain high(70-90) as her body fights. Her lungs sound clear.

The rash remains and continues to flare up and then disappear. Her hands have healed over night and there is no evidence of yesterdays damage. Prayer is a powerful thing and this morning I see evidence of how very much He loves my daughter. As you can tell in the top picture the rash is currently on her face and her lips have begun peeling and bleeding as a result. The rash is still a mystery to all 4 teams (transplant, dermatology, infectious disease, and pediatric), but they are all working hard to research and discover the cause. They are sharing information and working together for Ashley and Dave and I are so appreciative of that. We are blessed to have so many areas of expertise together in this hospital.

How can you pray for us? Let me share with you some of our requests.

1. Pray for healing and protection over Ashely's life.

2. Pray for her bowel. Our hope and prayer is that she suffers no more incidence of rejection and that it will begin to function again.

3. Pray for her respiratory status to remain stable.

4. Pray for this infection. We all know she is sick, but no one knows why. She will get worse before she gets better is what I am told, but I also believe God can remove it and turn her around if He so chooses.

5. Pray for our children. They do not yet know that I will not be coming home with Ashley. I don't know what to say to them.

6. Pray for our business. Unfortunately financial responsibilities do not cease when your children become ill. They tend to increase.

7. Pray for my husband. He is torn. He needs to be home for Blake and Allison's sake. He needs to be home to earn an income. He needs to be home to meet the needs of his patients and he does not take that responsibility lightly. He is in turmoil and that breaks my heart.


Your prayers are more than appreciated and your support continues to keep me going. I love you and I thank you from the deepest part of me.

9/22/2007

Lost

I need to write. I need to unload what it is inside that is killing me. I am afraid to put it out there for fear of being judged, but again if I am not honest in this journal then I don't want to have it any longer. I have a physical pain inside of my chest. Sharp and heavy across me and I really think it is coming from all that is bottled up inside of me. So if you disagree or if you are offended or disappointed in me I beg you not to let me know at this time. I really couldn't take it right now.

In my mind and in my heart I am struggling with guilt. I feel guilty for the thoughts and the feelings that I am having. I feel guilty for not bringing her here sooner. I feel guilty for not knowing how to help my Ashley Kate. I asked our surgeon what did we do wrong? What did I not do that I should have done to protect her? What can I do differently with Ash?

I feel disappointed. I feel naive. I feel betrayed. I feel lost. And I ask myself, "What right do I have to feel any of these things?" Which in turn adds more guilt.

God gave us Ashley. He gave her life. He gave her new organs. He gave her five good months at home. He gave and He gave and He gave because He is good, and I truly believe He is not done giving. I know this so why does it hurt so much?

In the back of my mind I knew how fragile she was and will always be. I knew we could lose all that she had gained in a matter of hours or days. I knew these things, but life was so good that I think I tried to forget the reality of transplant. It is tough. It will never be easy. It will always be difficult, but I didn't really believe we would have to return and battle for life and survival and stability again. Why did I allow myself to become that naive?

Ashley's bowel is not working. They call it an ilius. It is not moving. It is not functioning. It is sitting still and allowing the fluid inside of it to sit still. Thankfully it is not blocked at this moment and there are no strictures. We do not fail to be grateful for this news. All of her ostomy output has come to a halt and it is backing up in her intestine and coming out of her mickey button. We have attached a drainage bag to the button(the mickey is the button in her stomach that her feeding tube attaches to) and so far today she has put out about 800cc of bile. On the other hand her ostomy has put out 8ccs. Her vomiting has ceased although she is still nauseated. Her kidneys have come alive in the last 5 hours. She had only 3ccs or urine in the previous 12 hours, but in the last 5 she has had over 300. We are so thankful for this change. I see God's hand protecting her kidneys. We were very concerned and frightened as was our team of nurses and doctors. I am debating on whether or not to post some pictures of her current appearance. I would like to show you what has happened to her hands as her skin sluffs off, but I am concerned about frightening Blake and Allie just in case they were to walk by a computer and see them. I'm still thinking about this one. The kerotin layer of her skin has been affected by whatever is taking over her body causing her to lose it. If you peel tape or a dressing off of Ash right now that layer of skin comes off too leaving a raw, almost burned appearance to her body. Her right hand is now wrapped in gauze like a burned victim to protect the raw fingers from becoming infected. She is also losing her hair most likely because of the weakness of this kerotin. Again I feel guilty and I am ashamed because I have shed many tears over her hair and her appearance. Ashley's tiny features and beautiful petite face had just returned after being lost for almost a year and now they are disappearing again. I can't believe I am crying over the loss of her ponytail.

"She will get much sicker before she gets better". That statement sent fear and pain throughout my entire body. I now realize that Ash and I will be staying and not returning home until this mystery is solved and she is restored to relative good health. Again, I cried.

In the midst of all the hurt and guilt I still see the majesty and wisdom of my Father. I still believe He has work to do in my heart and in the life of my baby, but it doesn't keep me from feeling lost and broken tonight. I am still thankful for this life, this tiny person that I am allowed to love. I am still thankful for the friendships and support He has provided to us over the last two years. I am still thankful for her life, her breath, her spirit, her organs, and her beauty even if she loses parts of her hair or her skin. I am still thankful for each one of you. Your prayers are my most treasured comfort. Thank you. Your words to the Father are much more appropriate than my repeated phrase of please, please, please.

I am trying to get a handle on all that wells up inside of me. I am trying and tonight that is the best I can do. Please forgive me for being so weak. My spirit is weak, but my faith remains strong. I still believe in the midst of my confusion and struggle. Goodnight. Trish

Update!!

Thank you for your suggestions, however most if not all have been ruled out based on Ash's presentation. We are happy with the level of care today and harbor no bad feelings about last night. Things just get a little scary when her hair starts falling out and the skin starts falling off her hand. Ashley has been seen by Transplant, Infectious Disease, Dermatology, Radiology and Pediatrics now. The crazy thing is that her presentation does not fit the norm, typically Ashley Kate. They have begun 3 antibiotics however most agree this is probably not bacterial in nature. A virus is still the primary concern. They have ordered more tests than I think she has ever had. We will be going downstairs in a bit to do another type of GI scan as they found quite a bit of dilated bowel on the CT we did earlier. I asked how stable she is right now as I need to make a decision about getting home to the older kids and getting back to my responsibilities at work. The answer "Let's have you stick around a couple of more days."

Thank you again for your prayers, we do not take those for granted.

DAVE

Results from morning rounds

"I'm concerned. On a scale of 1-10 maybe a 5-6....or 7. I'm concerned about her all over." Statement given by our transplant surgeon

Going down for a CT

Maybe viral, maybe rejection, leaning more towards viral.

No urine output

request stool, urine (but there is none) and blood cultures again.

evidence of an episode of rejection on yesterdays biopsy results, but not currently in rejection.

Loss of some of the mucuosa inside of the bowel, sluffing off in some areas. Not good.

3rd spacing

should Dave stay or should he go home?

Blake's birthday is next week. Missed last year.

Allie is going to have a nervous breakdown when her mom doesn't come home

Infectious Disease docs rule out Stephen Johnson, fifths, and anything else they have ever seen.

Skin biopsy is not possible because of the nature of the rash. It doesn't stay localized in any one area.

Will begin anitbiotics(she is currently on NO medicine, including her anti rejection) in case the walls of the bowel are weak and content in leaking into her system.

Raise anti- rejection because of rejection episode or lower because of virus? Doctor isn't sure what to do.

Stress level is high. Emotions are high.

What do we do?

I'm not crazy

I just KNOW my baby and tonight I am telling them SOMETHING is wrong. I feel like I am slamming my head against a brick wall. If they don't listen to me I am going to lose it.

Ash's hands are peeling. Her right hand is hot and raw. She is losing all the skin off of her fingers and she has HUGE clumps, not a stand or two, but clumps of hair stuck to the skin. I can't bring myself to pull it off because I know how painful her little hand must be. Her abdomen is growing larger and larger by the hour so Dave and I started measuring it on our own. I have pictuers of the rash, measurements of her abdomen, clumps of hair. They will have to listen to me eventually. I have all the proof that she is sick. If I am told they are going to do a flat plate x-ray of her abdomen one more time I am going to scream. This will be the 5th one and it shows nothing. I want a CT scan today.

Hospital politics, especially at night, when the only one available is a resident who doesn't know what to do other than tell a parent it will have to wait until morning makes me crazy or angry or whatever you want to call it.

Ash has not slept all night. She is miserable. Her breathing is strained as she grunts and moans with the pain as well as fights the nausea. Only 2 hours and 20 more minutes until someone arrives that can actually do something. Sorry for venting, but its better to do it here on this blog than to lose my testimony. I can feel it may be coming to that.

9/21/2007

What is going on???


Can anyone explain this to me? What is going on with our sweet girl? This is what she looks like at this moment. Her body is covered in these red spots and then they disappear. An hour later they are back, but in a different location. It makes no sense to anyone. Her heart rate is in the 190s and she is miserable. The look in her eyes tells us she knows something is wrong and we are helpless to stop it. She continues to swell in her abdomen area and this is the scariest part for us. Something is wrong and she needs help. I have never seen her tummy look like this before. What is going on?


Please pray for Ash. Please pray for us because it is becoming more and more difficult to stay calm as her condition seems to worsen. I don't want to panic and I don't want to lose it, but since we arrived she is only getting larger and larger and more and more uncomfortable.

Scope

They just finished the scope of Ashley's bowel and the unofficial report is "it look beautiful." There is no visual evidence of inflammation or signs of rejection. Six tissue samples were taken for biopsy so we will be patiently waiting for the results. However based on the procedure and what I was looking at I feel pretty good that we are not dealing with rejection. The biopsies will tell us for sure. I was going to post a picture of her beautiful bowel, but Trish didn't think it would be very ladylike.?. come on,...It is pink...Thank you again for praying for our Gherkin.

DAVE

Morning Rounds


Morning rounds didn't really shed much light on Ash's condition. At this point we don't know what is making her so ill. If she is not in rejection(we will biopsy around 1:00) then it is more than likely a virus. The problem with having a virus is that most of them are not able to be diagnosed and treated. That means that we have to ride it out, and doing that with a weakened immune system and very fragile transplanted bowel can cause her to be sick for a long time. My question this morning was this,"Do we ride it our in Omaha or can we do this back home?" The answer? "Lets just wait and see. She has to be supported during the course of whatever she is battling and right now she is in the safest place she can be." Although I do not wish to stay here away from our family I agree that they know her best and can best take care of her.

Ash is sick. There is no getting around that fact. The walls of her vessels are very weak causing all of the fluid we are pumping into her to seep into the tissues(they call that 3rd spacing). Because of this her kidneys have shut down. They did place a foley cath in her this morning to better monitor her kidney function. She is very swollen because of the 3rd spacing and is starting to lose the look of our Ashley. They reminded us that it will get worse before it gets better. She continues to run fever and is very shaky and trembly. She will be requiring a blood transfusion this afternoon because she has become so diluted while trying to re-hydrate her. Her little tummy continues to cramp and she is groaning and grunting with much force.
She has required several albumin infusions, as well as calcium and potassium. Her electrolytes and blood chemistry is very messed up because of the loss of so much fluid through the vomiting and stooling. She has not been awake much. She is just weak and feels really bad. Ash has not eaten or received any nutrition since Saturday so they will be starting TPN tonight.

Overall my heart is very sad and very concerned. If her biopsy returns to us normal with no signs of rejection then we will lower her immunosuppression to try and give her body a chance to battle back against whatever has invaded. The catch to doing this is that she walks a very fine line of possibly slipping into rejection without the protection of that immunosuppression. Transplant is tricky and not easy. My sweet baby continues to be fragile and can at any moment pick up something that can cause you or I no more trouble than a trip to the restroom, but to her it can be dangerous. Her life is precious. It is a gift that must be guarded at all times, while still allowing her to grow up, live, laugh, and love life. Figuring out how to make this happen is really tough.

It all comes down to this: trust. Trusting the One who gave her life not once, but twice to protect it and to do what He knows is best for her. I'm just her mom, and the only thing under my control is showing her how much I love her and teaching her how much the Father loves her.

Again I thank you with everything in me for loving her enough to pray for her. It is such a treasure knowing that people are continually lifting her up. May God bless you for caring. Trish

9/20/2007

Reflections

Ashley is now in recovery and we are waiting to be reunited...hold on the Dr. just came out...The Dr. just told us that Ash did fabulous and the central line went in very smoothly. It was strange sitting in the OR waiting room tonight. I realized that 359 days ago we were sitting in this very same waiting room not knowing if we would ever see our Ashley Kate again. When we arrived in that room almost a year ago it had 30-40 people in it all waiting for word on their loved ones. Each time the phone would ring we would hope for word on our Gherkin. Hour by hour went by and one by one the people left until eventually we were the ones left waiting. Tonight as I walked in that room we were the only ones in there and I was taken back to that night. It gave me the opportunity to reflect on all God had done in that little Gherkin's life. It is truly a miracle how far she has come. We are now sitting in the recovery room with Ash and she is looking really good considering the day she has had. We hope to get back to her room so she can get a good night's rest. Tomorrow they will biopsy her bowel and we pray that it will be as healthy and pink as it was when we were here 3 weeks ago and they told us not to come back for a year. Thank you for your prayers and words of encouragement.

DAVE

Going to the OR

We will be heading down to the OR soon to try to place a central line. Not having and IV in when we go to the OR is not a good thing. They are tossing around several ideas and as of yet we are not really sure what they are going to do. We were concerned on Sunday night that she would have to have a blood draw on Monday. That was one poke, as of tonight she has had more than 25 pokes and we still don't have a solution.

Ouch

We lost her IV a couple of hours ago and have had no luck placing a new one. Attempt number 8, and its still no go. She is so dehydrated and weak she has no fight left. She doesn't even wince anymore. They have literally tried everywhere and are now thinking of going into the large vein in her neck. Attempts 9 and 10 have just blown. Her veins are very weak and they aren't holding a needle. I am asking them to take her into the OR tonight and place the line. Just please stop poking her!

Please pray for Ash. Please ask God to give her peace and strength to endure. They now have needles in both legs at the same time digging for something. I'm really gonna lose it!

Settled


We arrived at the hospital around 5:30 and we have now settled our sweet girl in. She is resting comfortably and actually looks better than she has all week. They just finished taking labs and they drew more blood out of her than I have ever seen(26ccs to be exact). They are doing a complete work up looking for answers and solutions. Ash has had it with the whole "poking needles in her vein" thing. She has more holes on her little arms, hands, feet, and ankles than she cares to have. Actually she is so exhausted she isn't even putting up much of a fight anymore.

Why are we here? Good question. I have been trying to answer that myself. I honestly thought we would go in for a little fluid replacement on Sunday evening and be back home by Monday evening. Not so. Flying back to Omaha this week was the farthest thing from my mind(in the beginning), but as the week progressed and Ashley Kate made no turn around it continued to seep into my mind that we could be headed here. On Wednesday morning when our pediatrician suggested the possible transfer I could feel my insides shaking. This morning when I arrived at the hospital I began to clean up Ash's laundry from around the room while her and her daddy were cuddled up together still sleeping. The pile of laundry told the story. She had continued vomiting all night. Once I picked her up I could tell her fever was still there and then I noticed her tummy. Distended. Big red flag. To Omaha we go and so we are here. Is she in rejection? We need to figure that out. Is it just a nasty viral infection? No one knows. We are praying for the latter. We can battle viral infections without this mommy having a complete meltdown. The battle over rejection gives me that shaky feeling inside, but if it comes to that I am sure we can fight that too.

The plan is this. Ash is scheduled to be in the OR tomorrow morning. They will do a biopsy of her bowel as well as place a new central line. Yes, I realize she has only been free of one for 3 weeks, but if you ask her she would say, "Bring it on and stop poking me with those needles!" As always I struggle with her going into the OR, but it is becoming just what we do with our Ashley. Her kidney function has stopped once again. They are very picky these days. This causes me much concern. I would like to be changing big, heavy diapers continuously as opposed to not.

Dave and I are here together and that always gives me strength. Knowing that the Father has not taken His eye off of my littlest daughter for even one moment gives me strength as well. Your prayers give me the strength to stay strong, think positive, and keep going. Thank you for standing in the gap for us. We will be home soon with our sweet Ashley Kate.

URGENT REQUEST

We are air flighting to Omaha at 12:30. Your prayers would be appreciated.


9/19/2007

Parenting all 3

At times like this it becomes very important for me to remember that I still need to take the time to parent all three of the children. As Ash's mommy I want to be the one who stays with her each and every moment that she struggles. I feel so torn when I am needing to be with her, but also needing to be with Blake and Allie. We try so hard to keep life as normal as possible for the older children even during Ash's tougher times. This week I have tried to make Blake and Al feel as though things will be ok and we will be back home with Ashley Kate soon.

Tonight we went out to dinner with Blake and Al while grandma sat with Ash. After dinner we took them to the hospital to see Ash. She was sleeping when we arrived, but unfortunately it didn't last more than a moment. She began groaning and struggling. Immediately Blake was concerned and very nervous about being there. He stood by her crib trying to soothe her, but her tummy hurts too much to be soothed. She thrashes around the crib and kicks her feet trying to make the cramping stop. The kids were scared and so I brought them back home. Dave is staying with Ashley Kate and I am going to try and stay home tonight. I tucked the kids into bed and spent time listening to them tell me all about their day. They are ready for Ash to come home. The house is too clean without her pallet of toys scattered in the living room and it is way too quiet. I am hoping Ash has a peaceful night. I can't imagine going through a repeat of last night. She is so tired and she really needs to rest. I'm only a few blocks away from the hospital so if I can't sleep and if I start to worry then I will run down to switch places with Dave. My biggest concern is him staying awake to help her when she throws up. I usually stay awake and just listen to her breathe while she is sick, and I am not sure he will be able to stay awake after working all day. I keep hearing her cry, but I know she's not here. I imagine she is tucked in next to her dad already.

Ash has had a really tough time with the vomiting today and she has maintained a fever for most of the day. That has been the most concerning. The good parts of today is that her ostomy output has slowed. I am encouraged by that. High output is a sign of rejection so knowing that it is going in the right direction gives me peace. She also continued peeing. That is very encouraging. She only had one dose of Lasix, but was able to maintain kidney function. Her new IV site is very sore and bothersome to her, but it has held all day. She is trying to pull it out of her arm so I kept a blanket wrapped around it for most of today. I'm praying it lasts until we bring her home so she doesn't have to through it again.

I really am tired so the idea of sleeping sounds so good to me. I hope that I can. More importantly I hope my sweet Ashley can. If I make it through the night then I will take Blake and Al to school in the morning and then relieve Dave at the hospital. That is the plan as long as all goes well. Your support continues to touch my heart. Thank you for praying. She's a pretty tough pickle. Good night. Trish

Hanging on

This morning began with a hope that she would start to settle, but it has not yet begun. She is still fighting severe nausea and fever. Her skin color is jumping back and forth from hour to hour. Sometimes she looks pretty good, and then the next hour she is white. She has green bile pouring out her nostrils as well as into her ostomy bag and out of her mickey button. She can not stop vomiting. If this is a virus it is a nasty one. She continues to groan and bare down trying to cope with the cramping that is going on inside. She is so tired. Absolutely exhausted from all that has happened since Sunday.

This morning her doctor gave orders to begin and ounce of pedialyte every hour by mouth. We gave her a small drink just trying to test the water. All though her little heart was so happy to have her sippy cup her body has paid the price. She cannot tolerate anything in her tummy. We have drained her stomach of all content through her mickey but she continues to be sick.

We are hanging on here in Longview just waiting to see what they think we should do. I asked her doctor this morning if her believed it was still viral or if she might be in rejection. He still thinks its something viral that has gotten her so ill. At some point in the early morning hours she became overloaded with fluid and we were able to give a dose of Lasix. The lasix woke up her kidneys and she began peeing off the fluid. We are so grateful for that. As long as her kidneys will stay functioning then we will be able to stay. Her vomiting has not lessened up today and actually seems to be worse, but her ostomy output has drastically decreased. Again, we are grateful.

Dave came in on his lunch hour and curled up next to her on the bed and they both rested peacefully. Theres just something about being in her daddy's arms. Since he left she has become very restless again. It is extremely frightening to see just how weak she has become and how very ill she can still get. If this is truly just a viral infection then it is a nasty one. She is battling back ( I think) it is just not easy for her to do.

Please join us as we pray for clarity about staying or going. Our doctor here is in contact with her team of doctors in Omaha and we are trusting that the right descions are being made on her behalf. Thank you for your prayers. Trish

I apologize for the rambling nature of this post. I am just so tired that my thoughts aren't coming out clear. It sounds awful to me as I read it back, but I just can't make sense of my words today. I am also struggling with a very weak internet connection and have lost several of my attempts through the day. I hope you can make sense of some it it.

Finally

Its 2a.m. and we finally got an IV going. Her veins are so tiny. She's tired. We are too. Dave just left for home because he has to be up in 3 hours for a meeting before work. Ash is trembling and nauseated. Her fever is back (102.7) and we are trying to get her settled back down. Her kidneys are still shut down with little to no output. If they don't kick in soon then they may transfer us out. Dallas or Omaha? We used to have a doctor in Dallas but I have no idea if they would take her as a patient. We disagree on scopes being done on her new intestine. I feel as though we would end up in Omaha. Please pray for her. She had 5 really good months(outside of chemo yuckies) and we were so grateful for the normalcy in her life. At the same time her health is a fragile thing and we are aware that things can change in a matter of hours.

Ash is scared. I can see the fear in her eyes. Blake and Allie are scared too. To be honest I'm scared. If we have to leave for Omaha or even Dallas I'm not sure how they will handle it. They have been so strong, but they are kids and their understanding is limited. Please, please pray.

9/18/2007

Broken Again

Just when I start to think that we are managing and she is safe then I am brought back to this place of being broken again. As I type I listen to the cry of my youngest daughter that is filtering down the hall. She doesn't understand why she hurts. She doesn't get it and that breaks me. If only I could stand in her place and take all that she must endure. How I wish it were my body that was broken and hers was made whole.

Ash is very sick. Something has her and we don't know what. She continues to vomit and has gotten to the place that she is now vomiting mucous, bile, and blood. Her insides are raw from the heaving and wretching. She is losing more than double and almost triple her allowed amount of output in her ostomy. In a three hour period this afternoon she lost over 600ccs of stool. That is 3 times the amount she normally puts out in a 24 hour period. Her tummy is in a turmoil as it cramps continuosly. She is straining so hard with the cramps that she is actually having mucous come out of her rectum and her colon is not even attached. She is sick. Her little body has a rash that is spreading to different areas. At this point it is all over her back. Earlier it was her torso. Then her diaper area and legs. What is it? We don't know. She has only had 20ccs of urine out for the entire day and we were forced to tap her bladder to see if she were holding urine because of the pain. There was nothing there. Just a few ccs. We are pouring fluids into her and she has lost her IV. They are trying to restart one, but all I know is that she is screaming. I have lost count of the little holes that she has from all the labs that have been taken. We took an abdominal x-ray to make sure the bowel was not blocked or twisted. Praise God that it appeared to be normal. She has had fevers off and on throughout the day and she just feels so bad. As her mommy my heart feels as though it is being ripped into pieces and my pain is only emotional. My sweet Ashely's is far worse. Hers is real and I can do nothing to stop it. She is exhausted and weak and confused. Again I am broken.

My heart wants to cry out that all is unjust. She is innocent and has done nothing to deserve any of her struggles, but I know that would not be right. I would like to ask a million questions and I would like to be able to change all that she is dealt. He knows my heart and He hears the questions without me even speaking them. If it is for His glory then let it be, but it is not easy for her and it is not easy for us to watch. She is the sweetest baby and I want to give her happy days filled with fun and laughter and joy.

Tonight we hurt for her because she hurts. Tonight we cry because she cries. Tonight my heart breaks because her little body was born broken. Praying tomorrow will be better.