Ashley's Story

She will leave fingerprints all over your heart

8/31/2010

A Father's Love



It was the first weekend in July of this year. We had found ourselves spending yet another holiday in the hospital with our sweet Ashley. At the time we had no idea how very serious things would get in just a matter of days. We all assumed she was battling dehydration from the left over virus she'd had the previous months.

Ashley Kate cried. A lot. Her body was severely dry and she needed a drink of water. Not wanted a drink, but needed one. It was 3 of the hardest days I think we have ever endured in the hospital. Seems silly to say that, but Ash was conscious, she was aware, and she was suffering from the dehydration. She pleaded, and screamed, and whimpered, and cried for 3 days with no relief. Her tiny voice could be heard down the halls and into the rooms next door. I know this because we have been told by friends who happened to be visiting another patient on one of these days.

Dave and I were at the end. Truly we were. Not allowed to give her even a sip our nerves were shot. Our hearts were breaking. Our Ashley was confused and angry and so very thirsty. So the only thing we knew to do was walk. And walk we did. We walked and walked and walked the grounds of that hospital in an attempt to distract our sweet girl from the constant need for a drink. On the second day of this "walking" it began to rain outside. We were keeping Ashley underneath the covered drive outside the emergency room. Every so often we would push her little toes out from underneath the covered drive and allow the rain drops to fall on them. She began to sign, "rain, rain, more rain" again and again and again. So...we took her out in the rain, and we walked. The rain came down on our heads, our faces, and her tongue. Much to her delight she figured out that the rain was wet, it was water, and if she held out her tongue the drops would eventually quench her desire. What were we supposed to do? Deny her? Not in your life. We allowed our baby to "drink" the rain that afternoon.


The next day was more of the same. The screaming, signing, crying, flailing and fighting for a cup, a drop, a drink. It was the saddest I think we have ever been. Dear friends stopped by for a visit. They didn't stay long. Days later they shared with me the tears that fell from their eyes over her suffering the moment they stepped onto the elevators. It truly was heart wrenching. So...we went walking. Again. Dave and I honestly have never had feet that hurt so bad. Our feet were so sore, but Ash needed to be distracted. So we kept going.

As soon as we stepped outside she began to sign, "rain." To which her daddy replied, "there is no rain today, baby. Its not raining."

Not good enough.

The signs kept coming, "Rain, daddy, please, rain, rain, rain, daddy". He would answer her, "I can't make it rain, Ash. I can't." and she would cry. Shake her head, No, no,no and sign, "rain, daddy, please."

What else could he do? Nothing, right? I mean he can do a lot of things, but rain? He can't make it rain. Or can he?

You see, her daddy outsmarted the weather that Sunday afternoon. Oh, yes he did.

He came upon a sprinkler on the hospital grounds. Connected to that sprinkler was a water hose. As I came out of the doors of that hospital I witnessed my husband loving our daughter. A father's love. There is nothing like it. What I stumbled upon that afternoon was my husbands thumb, covering the end of that hose and holding it up at such an angle that it began to "rain". And "rain" it did that afternoon all over my sweet Ashely's face. Her head was tilted back in her chair and her tongue was stretched out as far as it could reach. Much like in the picture I took of her today.

I can honestly say that I have never loved him more. Nor hurt for her so much, little did I know that the hurt was just beginning that day.

I sat and watched along with my mother in law, my father in law, and my son as my husband gave his all to our Ashley. In her mind there is nothing her daddy can't do for her. In those moments I saw that she was right. If it needs to be done, if it has to happen, if it will comfort her in her time of need, or bring her a moment of joy, then there is nothing that will keep him from providing it. That is how very much she is loved.

A father's love will stop at nothing. NOTHING is to big.

This why I know we are going to be alright. If we can get her home, then she's going to be alright.

How much more does our Heavenly Father love our daughter? I wonder. I really do. It must be an awful lot. It truly must be.

Transition

From this on Sunday morning...




to this on Monday morning...



to this today...

Last week was a week of healing. This week is a week of transitions. Ash has gone from being on the vent, to the nasal cannula, to nothing. Last night she took herself off of oxygen and has been satting in the mid 90's all on her own ever since. She is generally really good at letting us all know when she is ready. Once again, she showed us that she was. Her breathing is still very loud and very labored. Her throat has a lot of healing yet to do. So much more than what any of us had expected. It is still very swollen and traumatized making her breaths sound awful, but the sounds are coming from the airway and not the lungs. Her lungs are well and functioning properly. Her airway is struggling and yet she is breathing all on her own.

Today we began another transition in preparation for our final transition home. We began moving from IV narcotics to oral narcotics. Ashley has been on some MAJOR doses of medications over the last 3 weeks and they each require a slow wean off. She is currently being switched off of the ver sed and fentanyl drips. She initially went to IV methadone and IV ativan, but today transitioned to oral methadone and oral vallum. She is also recieving 37 mics per kilo of fenatnyl through a patch she wears on her back. It is a long road back. We are anticipating months of weaning her off the narcotics. Life in our home is not going to be what it was, but it is still life and it will be in our home and for those two things we find gratitude in our hearts. We are seeing the light at the end of this current tunnel all the while knowing the longest tunnel of her life is just around the corner.

Once Ash has successfully transitioned on the medications we will transition her back home toward the end of this week. Yes, I said HOME this week. It will be different than it was, but it will be just as precious to all of us. I have a lot to get done in preparation for the transition and I am hopeful to make it home tomorrow to begin getting things in order for her arrival. At this time we are going to attempt to keep Ashley Kate in her own bed although we are moving it in to our room next to ours. We believe she will do better once we can get her back on her own routine and schedule and into her own room, but for the first few weeks she needs to be close to us so that we can administer meds, tend to pumps, and all of our new normal. I have lots of organizing of supplies to get accomplished and lots of prep work like moving closets around so that her supplies can be stored close to where we will be sleeping. I also need to get all the heavy cleaning done like bathrooms, floors, windows, etc. so that the chemicals will not be fresh in the air when she arrives home. Her respiratory status is very important at this time and very fragile. We have to protect it especially while her throat is still healing.

Once we make it home then we will focus on accepting one day at a time. Trying not to dwell on the what ifs and the unknowns of her health status. We want to live, to love on her, and to enjoy our time together. Whether that be swinging in the play room or snuggling on the couch. Its all going to be precious and not taken for granted. We know the obstacles that have been set in front of her. We know we are hoping for the opportunity to return to Omaha. We know we will be waiting for the phone to ring if transplant chooses to re list her. We know when that call comes that life will once again change for our family as Ash and I leave our home to fight for her life. We know all of this, and yet we don't want it to consume our thoughts causing us to miss a moment of living. Blake and Allie will be just as busy as always and we are going to do everything we can to be completely present for all 3 of our children.

I'm looking forward to going home. To that first night with all of us back in the house together. Life is messy. Its sometimes scary. Sometimes unpredictable. In the end no matter what else is taking place around us our desire is to be together. If God grants us that opportunity then I can assure you that we won't waste it. Not even one moment of it.

Ashley Kate wants to live. Dave and I are going to do our very best to keep her as safe as possible while we allow her to do just that. As hard as it is going to be for us not to keep her trapped in a "bubble" we just can't do that to her. She's fought too hard to experience life and so we have to let her. My hope is that I can take in each moment she experiences and not waste one second of it on worrying about what has yet to happen. That is my desire.

Transition isn't always easy, but its the bridge to home and we are ready to cross it. Together.

8/30/2010

There are days...

...when you just want it all to stop.

...when your tired.

...when you want to announce to everyone to just...stay out, give us one day. Please.

...when you just want to be the mom. The one in charge of her care. The one responsible.

...when you realize that enough is enough and you need to take her home.


So let me preface this post with a few statements. If you happen to be a nurse, please don't think I am attacking you or anyone in your profession. If you work in a PICU, don't go on the defense here. I am not upset with ANYONE in your profession, in THIS hospital, in the LAST hospital, or in ANY hospital we have ever been in. I'm not. I'm just sad today. Thats it. PLEASE don't read anything extra into what I am going to share. Just don't. Again, many of my very closest friends are nurses. Ashley Kate's nurses. Past and present. I will share with you all that the angriest, most hurtful, damaging comments in the last four years have come from nurses thinking that we don't appreciate what they do. Its ridiculous, because if you know us at all, really know us, then you would know that our appreciation and gratitude and respect for these professionals runs higher and goes deeper than ANY OTHER MEMBERS of Ashley Kate's teams. My nurse today was wonderful and kind and all you could ask for. This post is not a reflection on anyone. Its just where I am today in the journey.

Anyway, with all that said, my heart is sad today. It just is. I'm tired. Ash is tired. We are all tired. Home has never sounded so good. It has been 10 very long weeks this admission. I'm just ready to be the mom again. For some reason it is assumed that a mom's responsibility ends the moment your child becomes a patient. This is such a ridiculous assumption. It really is. Every day of Ashley's life I have changed her diaper, emptied her ostomy bags, given her meds, dressed her wounds, bathed her body, connected her lines, and taken care of her. It is my job. It is what I do. Let me do it. Please, just let me do what I do. If you would like to do it yourself, then at least ask us. Please.

I went outside today. With my daughter. You see, she's still my daughter.

I didn't go without permission. I had permission. I was told, "Take her down and let her see outside." So...I did. With her oxygen tank, IV pole, and stroller we went down and went outside. It was the first time she has been outside other than transfer to and from an ambulance to a jet since July 4th. Yes, we were still patients on the holiday, but we walked miles and miles and miles around the outside of our home hospital that day. I sat on the concrete next to Ashley in her stroller. People came and went. Most smiled as they passed. I watched the breeze blow in her hair and I allowed the sun to warm her skin for a while. She was so calm. Her breathing slowed, the violent sounds of the stridors disappeared, and she laid her head back in the sun and slept. I cried. My heart was so sad in that moment. I don't know if you can understand the sadness unless you've lived in a hospital for months with one of your children. Unless you know that the end of their life is now closer than you've ever thought possible. Unless you have watched their joy for life dwindle day after day as they lie in a bed in a room so void of the sun and the wind and the world. It broke my heart and blessed it as that breeze blew strands of her hair across her face.

It put the floor in a small panic. You see there was no written order in the chart for her to leave the floor. I didn't know their needed to be one, and in all actuality there doesn't. I'm her mom. Her parent. The responsible party. So...thats the way it is. I was told, "You need to take her down and let her see outside." Thats what I did. I took her. The nurses wanted to come with us. "Ok, if you think you need to, but I do this all the time. Just me and Ash. We live in and out of hospitals and I'm used to pushing the pole. Come if you'd like, but you don't have to."

At the end of her life and ours there will be two people held accountable for her days. Me and Dave. Its our job. Our responsibility. When she leaves this earth it will be our hearts that break. If taking her outside today was the only act of normalcy that I was given the chance to provide for my daughter, for this little girl, this miracle child, then I'm glad that is what I chose to do. We went outside, with permission...so sue us. I promise you if something had happened we wouldn't sue you or this hospital. Its the way life works with our daughter. She's going to die. We know that. Whether it be today, tomorrow, or years from now... she won't live to adulthood without a miracle. We are accepting that fact. As painful as it is we have no choice but to accept it. Just allow us to go outside on the days that she feels good enough to go. Its the least anyone can do for us.

I want quality of life for Ash. That doesn't mean we are upset, ungrateful, or angry. It just means that our days are limited and we want to go home to spend those days outside if we so choose. Thanks for listening, and if I happen to see any familiar names pop up that we know have been unkind toward us in the past just know that I'm going to delete what you have to say without even reading it. You might not want to waste your time.

Perfection!!!

I know its early, but I just had to share....SHE HAS A PERFECT BLOOD GAS!!!

Can you believe it? I was lying here, praying, almost dreading what was going to be done when the nurse and RT stepped in and whispered, "are you still awake?" Ummmm...Yeah...

Then they said, "its perfect. She has a perfect blood gas." They read me the numbers and I am so relieved, so blessed, so happy.

Ashley's breathing sounds awful! The noise coming from her throat brings back to me very vivid, very real memories of our last attempt at extubation, but...this time she is not only able to oxygenate she is able to ventilate past the swelling as well. Her sats are decent, blood gas is perfect, heart rate is stable, blood pressure is rock solid. Other than the "ugly" sound of her breaths SHE IS DOING IT this time. Or rather HE IS DOING IT? Either way you want to spin it, at this time she is currently not in dangerous waters. The vent has even been removed from the room! I realize we still have another 24 hours to go, but this morning I'm lying here in the early morning hours listening to my daughter breathe, not effortlessly, not quietly, but still adequately and I have to praise God for that.

Now I'm going to close my eyes for a little while longer. Enjoy your day.

8/29/2010

Representation

Acute. Raw. Fragile. Painful. Frightening. Impairing. Unbelievable. Wounded.

I look at this photo of Ashley Kate's foot and I instantly hurt inside. The severity of the injury takes my breath away. Still I stared at it for a long period of time and it dawned on me that its a great representation of the condition Dave and I have found our hearts to be in.

We sat across from each other last night and came to the conclusion that we still have more questions than answers. Even together we remain unsure of what the future holds. Apart we hurt... together we still hurt. The distance between us, whether it be 700 miles or 55 miles, has not changed the fact that we are still oozing and bleeding on the inside.

At the end of the evening as we drove back toward the hospital that all 3 of our children were sitting in I said out loud, "We have got to figure out how to make this more about eternity and less about today. If we fail to do that, then we have failed period. There is no other way to get through this."

Its true. Like it or not. This is not about us. Its not about our family. Its about something bigger than that. I've been honest and I'll continue to be, I don't like this. I DON'T. But guess what? He doesn't have to check with me first. He just doesn't. He is God and I am not. He was not created to perform as my personal "genie in a bottle". No, in fact, I was created for Him. His glory. His purpose. As was my husband, my son, my oldest daughter, and my youngest.

What is the purpose in her suffering? Is there one? I have to believe that there must be. Do I think He did this to her? To us? NO, I don't think He did. Do I believe with every part of my being that He COULD stop this from happening? In an instant? In one thought, one word, one breath? Yes, I do. Has He? Not yet. Is He going to? I can only hope and pray that He is going to perform a miracle, but still I know that He may choose not to.

Questions? We have them. You had better believe that her mommy and her daddy are questioning a lot of things at this point, but do we still believe He is God? Yes, we do. We still believe that in some way or another His purpose must be fulfilled and He must get the glory in this situation. Even when it hurts, and I can promise you that we have never hurt so much in all of our lives. We are injured. It is still very, very, acute. It bleeds. It oozes. It impairs.

Ashley Kate has been off of the vent for close to 10 hours now. Its not easy. She is struggling, but yet she is still maintaining stability. Her throat is very sore and still swollen making her breathing very, very loud and scary. Her numbers are good though. Its the numbers on her monitor that we are following for now. She is still on a fentanyl and a ver sed drip. Along with scheduled methadone and ativan. These drugs are allowing her to sleep and rest. She does wake up, is coherent, and signs. These are very good signs. The night will be long. As will tomorrow as we wait to see how this will play out. We need for the stridors to stop and for her throat to begin healing making breathing come easier for her. We are not stimulating her in any way. Skipping most cares and just allowing her to be still as her body does the work of healing. Our hope is for her to make it through the next 36 hours vent free. At 48 hours we will know for sure if she has done it or not. Again, her lungs are not sick. They are functioning very, very well. The issue is her swollen and traumatized throat. Your prayers during this time are greatly appreciated.

Dave and the kids have gone home to Longview. It is once again Ash and I on our own. If things go the way we would like they won't have to come here to visit us again, but rather Ash and I will make our homecoming toward the middle or end of the week. Not sure if its a real possibility or just a dream at this point, but it remains the goal.

Its been a good weekend. It really has. It held some precious moments for our family. Some laughter, less tears, a little baseball, and lots of hanging out. We are grateful. We truly are, and yes we can still say with tear stained cheeks and wounds that haven't yet healed that God is good.

I'll give you one guess.....

Guess who is off the vent and breathing on her own? She made it past the first 30 minutes which is the first hurdle, the second comes between 4-6 hours. If she can make it past that then she should be able to do it. So we will praying for her lungs until about 5pm. Go Ash, I know you can do it!!

8/28/2010

Big plans

All throughout today and especially tomorrow morning we would greatly appreciate your prayers. The big plan is to remove the breathing tube from Ashley's throat. We have no idea if it will end in success or disappointment but the ICU doc said, "the only way she will ever come off is if we keep trying". We are in agreement that we should give her another chance. Our hopes and our prayers for her are that the swelling and trauma in her throat and around her vocal cords is gone or at least reduced enough that she can breathe despite it. We are so ready to take this little girl home and allow our family to love on her in the upcoming months. We need three or four good ones before we are allowed to return to Omaha.

For today Dave is with our girls in the PICU and I am sitting at the ballfield watching my son do what he loves most. I don't take a moment of this time for granted knowing how uncertain the time I will have with him playing his freshman year is. When Ash gets her next transplant I will be absent for many months making today so very precious. So... He and I are enjoying it. We've laughed hard. Visited a lot. Enjoyed lunch out together. Prayed for his little sister. And now we are ready to play ball. Not sure if I've shared lately how much I love this kid. I enjoy him so very much. He is such a joy to be with. I am so blessed today!

Dave and I are thinking about calling the grandparents to sit with Ash tonight so we might have a date night. We haven't spent more than a few minutes together at a time in months and we just miss hanging out with each other. I'm kind of excited about the idea!

So we have BIG PLANS in the works for this weekend. I'm feeling hopeful that she just might do it this time. If she does then we may just be days away from bringing her back home. That has us all smiling today. Thank you so very much for your prayers. Enjoy your day.

8/27/2010

10 things to be thankful for in room 409

1. Ash's line worked exactly as it should this mornings blood draw
2. The blood values look better than yesterday
3. Her regular PICU Dr. is getting some much needed time off and a fill in Dr. stopped by and was very pleased with how she is breathing over the vent.
4. thus her morning x-ray for tomorrow has been canceled
5. if she continues looking as good as she does now she might get to come off vent tomorrow or Sunday
6. blood gases canceled because the Dr. likes how she looks
7. Pharmacist has made significant progress on weening her off the narcotics
8. and.....when my lunch plate got here it was catfish, Trish hates catfish but she ordered it knowing that I would be here. :)
9. A couple of local Blog readers are bringing a basket full of stuff and some mexican food later.
10. We are blessed with progress today in room 409

Choking

I cut the grass this morning. It was desperately in need of care. I have no idea how to mix gas for the edger and weed eater, but I did get the grass cut so its a least better than it was.

As I walked behind the mower I was painfully aware of how choked our lawn is looking. The weeds have invaded our beautiful green grass and they are doing what they do best. Destroying. Ashley became ill the week after mothers day. That is when our normal became so not normal. Since that time we have been consumed with her care and condition and the juggling of Blake and Allie through the whole process that things like lawn care had to take a back seat. If only our neighbors knew the situation we are in. Perhaps they wouldn't think so poorly of our ability to maintain the grass? Oh well, it is what it is and today the grass, weeds and all, has been cut.

Choked? I know the feeling. I know how it feels to be invaded, overcome, and choked. The weeds I saw this morning strangely reminded me of my own life the last few months. What I thought was beautiful has become not so beautiful. What I took the time to maintain and care for has become crowded out by circumstance, fear, pain, hurt, and anger. Ouch, I said aloud to myself. This is me. Its my heart. In all of its ugliness, this lawn that is trying to maintain itself without the help of its caretakers is a representation of who I am today. Trying desperately to remain "green" amidst the heat. Trying desperately to look "cared for" all the while feeling the effects of neglect.

I'm going to get painfully honest with you today. Painful for me, not so much for you. You see it was just a couple of weeks ago that I sat in a recliner next to Ashley Kate's hospital bed and glared at the leather bound book across the room from me. I knew it would be something I needed with me as I flew so far away in such uncertain times. I knew the comfort that would be found within, and yet as I stared, no glared, at it across the room that day I admitted to myself what I am going to admit to you now. I couldn't open it. I didn't open it. Not even one time. It sat next to me all those days and I sat stubbornly next to it without opening its pages for even one moment. I was angry. I was hurt. I was going to "show" Him. I avoided the pages filled with His words, His wisdom, His comfort, and His love day after day after day. Why? Because I was hurting and if I was hurting so deeply and our Ashley was suffering so much then I wasn't going to spend anytime in His word. So there. Take that. I'll just let you feel what I feel. Abandoned. Betrayed. Neglected. My sweet friends that is the truth of where I've been. Only hurting myself in an effort to make Him hurt along with me. Take notice of my pain. Look down and see the effects of her suffering on the heart of her mother.

As I sat that day glaring at my leather bound book, the phone rang and I began to allow it all to spill out of me. I shared with my sister that I thought if I could somehow surround myself again with His word, flood my soul with praise and worship, that I just might survive another day. I needed help. I realized my very soul and the faith that it was founded on was being choked out of me. I asked her for help. Not something I am very good at doing, but I humbled myself and said, I need a favor. She along with my other two siblings sprung into action and gifted me with what has filled my ears, my mind and my heart all morning long. God's word. Spoken through the passion of my brother's heart behind the pulpit over the last 8 years. Not only those messages, but hundreds of spirit filled praise and worship songs. I mowed that grass this morning with a song in my heart and praise on my lips as the tears stained the dirt on my cheeks.

My precious friends is it possible to love the Lord and continue to praise Him in the most desperate of situations? Will I be able to say that God is good if my sweet baby never smiles again? How can I still believe in a God of miracles if my daughter is not granted one of them? I don't know. I truly don't. I'm not sure that my heart will be able to say or continue to feel any of those things. I'm being honest. I just know that I have to try. Day in and day out of being angry is not getting me anywhere. I need Him. I need to feel His love. I need to know that He is standing closer to me than any other although I feel as though I am standing in this hell all alone.

Where will we be on the other side of this journey? I can tell you that I do not know. Will our faith be strengthened or will it crumble? Will my children witness two parents who gave their very best to their God in the middle of the most unimaginable pain possible? I don't know. Will their faith remain intact and will they be able to trust our God? Again, I don't know. I don't have the answers to any of the questions that flood my mind on a daily basis. What I do know is that we are trying. We are being honest as we fail and we are being honest as we succeed. We are seeking His face when it feels as though we will never find it again. We are hoping for miracles because He is a God of miracles. We are praying for mercy, because we believe He has the power to grant it toward our sweet Ashley.

Will the life of our daughter be stolen from us, the joy of our hearts be choked out among the pain, or the faith of our children shake as the ground beneath their feet trembles? I don't have the answers. I do take some satisfaction in KNOWING that a day will come where our God will be victorious and the one who is behind the evil in this world will be held accountable. I know that no one is getting away with this. The pain that we are enduring is but for a night and our joy is going to be restored one morning. That is truth. Even when I feel so very far from it, it remains to be true.

Dave and I are believing in our daughter. We will not give up on that belief. I am actively working to "weed" my heart and get it back to a place that trust and hope and love can grow. Kathy, Toni, Chuck...thank you. Thank you for stepping in and filling a need in my life and for giving me something solid to put my slipping faith back on. I love you all with my whole heart. Our childhood home was not perfect by any means, and the marriage we all came out of may have fallen short, but in the end He used it to serve a purpose and for the three of you I will eternally be grateful. You remain my closest friends and I thank our God for each one of you.

I just stepped through the door of our home and climbed into my bed. I walked through our nursery with a pain in my heart to peek into the room of my son. I walked back through our nursery, paused for a moment at the foot of Ashley Kate's bed and closed my eyes remembering what it looked like with her so sweetly tucked into it. I walked down the hall looked into the door of Allison Brooke's room and listened as she lie there breathing. I was grateful for the sound.

Now I sit in my room, on my bed and try to remember how good it feels to snuggle up next to my very best friend. Its been 9 weeks since we last lay next to each other in this bed. Its been 9 weeks since all three of our children were fast asleep in there beds. Its been 9 weeks since our world, my favorite piece of it, was all well. There is nothing I love more than to end the day with Dave by my side and my children all in our home asleep in their beds. Life does not get any better than that.

Dave and I traded places tonight. He at the hospital with our gherkin and me in our home with Blake and Allison. The children put themselves to bed tonight, no conversation, no prayers, no goodnight with their mom or dad. That pains me. It truly does. In the morning I will wake them, pray with them before leaving the house, and take them to their schools. I'm so grateful to be here. So grateful to have the chance to look at them as they sleep and wake them for school. How I wish we were all here together, but since we can't be I'm going to be grateful that their is a highway that runs between the two places in which our children currently reside. It takes me a little over an hour to get from Ashley Kate to Blake and Allie. I'm grateful that we have a vehicle that can run that highway as many times as it has this week. I'm grateful that I have a husband who is willing to drive that highway over and over again each week even if he only has an hour to spend with Ash before needing to return home. He drives two hours to look at her for one hour.

It is no accident that we are arriving each way safely. I don't take it for granted that while we are spending so much of our time on that highway this week we are under His protection. I know we are only safe under His arms. I envision the Father's hands around our vehicles as we drive. Safely taking us from one place to the other. Even while we are exhausted and our eyes are fighting to stay awake as we drive. I'm grateful to be here. Safely.

Ashley Kate was awake and alert more today. The paralytic has worn off and she is now being weaned off of the fentanyl and verced drips. Her body is suffering with withdrawal symptoms and she is being treated with high doses of methadone and ativan as she adjusts. To watch her tremble and see her have no control or understanding of what is taking place in her body is difficult. Ash will be on these drugs for a while. It will be a slow process of decreasing the amounts in her body. She began to breathe above the vent in the hours that she was awake today. That is a good sign. She is trying to communicate by sign although her tiny hands are very weak and uncoordinated at this time. Her rate of respiration's on the vent today was decreased to 22. She has to be down to 8 before they will attempt to remove the breathing tube. The other measures are all at the rate she needs to be at to come off of it. The drain was removed from her abdomen this week and the ultrasound revealed no more build up of fluid today. That is a praise. Her line is flushing well, and drawing periodically. Some days it works great and some it does not draw at all. It is so frightening to know that it runs through such a vital organ. X-ray shows us that the placement of it has not moved and so the fact that it is so "picky" is tough to swallow. We desperately need this line to work and to last. I have no idea how long it will take to get Ash home. I do know that it is the goal of every member of our ICU team. They all want us to get to take her home.

Our current plan is for Dave to stay at the hospital with Ash tonight and tomorrow. I'm going to try and get the house cleaned up, the laundry caught back up, and the lawn mowed while the children are in school. Tomorrow evening we will all go to the hospital to spend some time with Ash and then the kids will stay in the RV that is parked in a lot at the hospital for the night. Saturday and Sunday afternoon Blake will be playing baseball. Allie will be staying at the hospital and Dave and I will be taking turns watching the games.

Life isn't perfect or even normal. No, its not even close to either of those for us during this time, but we are close enough to have some time to spend together. For that I am grateful. More than anyone could probably ever understand. Like Dave said to me this afternoon, our goal at this time is to make sure our family survives in tact. We can't even see past that goal at this time. One day at a time concentrating on our children and getting all three of them through this current struggle. The physical, emotional, mental, spiritual, and financial. We have
quite a task set before us. We have no choice but to come out on the other side together and whole. There is no other option.

Thank you for being here. Thank you for being patient with us. Thank you for your continued presence, kindness, encouragement, and prayers. We know we are not alone. You have no idea how comforting that knowledge is at this time. I just wanted to say thanks tonight.

8/25/2010

Missed

Dear Ashley you are so missed. As you lay resting so close to us but still so very far away do you know how much mommy and daddy have missed you? We sit next to your bed each day just waiting for you to return. I want so desperately to see your chest rise and fall with each of your own breaths. I want so desperately to see you return. If only we could see a glimmer of you in your eyes. One glance, one brief sparkle would be a healing sav on our wounded souls. I know you are inside there. I know you are. Your absence is temporary. It's for your safety and your healing that we have agreed to allow this at this time in your recovery.

Ash you came so close to leaving us. I was so afraid to breathe another breath if you were not able to breathe too. So afraid as the moments passed that a moment would come and you would not be in it. Praise God sweet Ashley Kate that you are still here. How could i have called your daddy and told him you had been lost? My soul was tortured that morning. As you laid swollen, discolored and still I shook inside. My eyes failed to close for fear of you slipping from this world into eternity if I slept.

Ashley Kate, daddy and I believe in you. We feel so strongly that you will come home with us. You will. It didn't happen today, and it won't be tomorrow. But... The day will come that I will carry you back into our home and we will begin to fight our way back to retrieving your sweet life. Your happy, innocent, precious days. Ash, mommy doesn't know how many more days we will have together but I do know that we will give you the best we have to offer. If it be 10 or 10,000 we will stop at nothing to make them count. You are missed my sweet girl. Come back to us. Breathe again. The moment that you do we are going home. I promise.



It is not intentional that we are staying away. We have no ability to access this journal from the hospital. If we could give updates on her status daily we would even if it were just stating the facts. I'm not hiding. Not trying to be unkind to the thousands of you who have loved our baby over the years. Just in an impossible situation right now. On the nights that Dave drives over we share on his phone. On the weekends we will do the same. I promise you that. Ash is beginning to wake from the paralytic. We have seen her eyes open and tonight she did clumsily sign for water. It blessed our hearts to see that her mind is still functioning and cognitive. She is in there. She has a long way to go. A week or more of weaning before any attempt at removing the vent will be made. It is one of the hardest things we've ever done to see her back in this condition, but we still firmly believe in her ability to win this battle choir prayers are coveted at this time in our lives. Much of what we hold dear is crumbling but we are as united as we have ever been. We are a family of five and we plan to fight to stay that way for as long as God allows. Goodnight and bless you for your encouraging words. We love you.

8/23/2010

Focus

I'm working hard at coming back to this place. This place that belonged to us. A precious, beautiful place that recorded the story of our daughter's life.

We've looked at many options. Options that aren't going to work. The only thing that would work is turning off all comments completely. I don't want that. I need you. In the darkest times of our lives you have all been there. Most of you love us. Most of you truly do.

Im trying to focus. Focus on Who matters. The Lord. My husband. My son. My daughters. That is where my focus lies. I've got to keep my eyes on them.

Ashley Kate is very sick. She came very, very close to leaving us in the early morning hours of Friday. She remains on the ventilator. She has been paralyzed for her own safety. Her throat has suffered great injury from the many intubations and extubations of the breathing tube. Yesterday she was taken to the OR to replace the breathing tube once again. For the first time in her life we had to sign consent for a possible tracheotomy to be done. Thank God it did not come to that. They were able to place a larger tube into her throat and it began to give her the amount of assistance she needed.

To say we miss our baby is an understatement. It hurts so much to see her lie so still, so absent, so gone from us. We are in agony as we await the day her precious eyes open, her fragile lungs begin to breathe again, and her spirit returns. Blake and Allie have not seen her yet. It is almost more than Dave and I can handle to watch her be "away" from us. I can't bring them to her yet. Not like this.

The plans for transfer came about on last week before the "event". After the "event" we were all in agreement that we needed to bring her closer to home as soon as possible. There was nothing left for transplant to do. They can't help her again unless the decision is made to place more organs inside of her body. Our time with her is the most valuable thing in our lives. It needs to be spent together. So...we brought her back. I didn't need to publish it. I needed prayers for her, but I did not need another word of criticism. It was our decision. Made with multiple members of her treatment teams. It was the best thing for her and for our family at this time.

I don't know when I will be completely back. I just wanted to let you all know how very much I love you. How very much I appreciate your prayers for us. I am afraid to share our hearts and our hurts again. So afraid. Many, many things are going on at this time and it hurts so much knowing that our safe place to share has been so violated.

Your prayers for our family during these unsure days are treasured gifts. We want nothing more than to have our Ashley back in our home. We miss her terribly. Our home is empty without her.

8/22/2010

Just to say...

I'm here for a brief moment. Just to say...Thank you.

Steph, Jamie, Bob, I know there were others. I still can't remember, but I know you where there doing all you could. I'm sorry I can't remember each of you that were there with us, but still I want to thank you again.

My heart hurts so deeply. Still days later, I am so deeply hurting. The images. The sounds. The haunting memory.

Do you know how valuable you are? Do you realize what you did for us in those early morning hours? Do you know? I sincerely hope that you do. It was so much more than just "doing your job". You kept her here. You allowed us to keep her. Another day. More moments. Memories to be made. A family of 5 remains. Thank you.

I don't know that any of you read this journal. I really have no idea, but I do know that some of the staff in the unit does. Maybe they will let you know that you kept our world from ending that morning. I hope they will share with you how deep our gratitude truly is.

I will never be able to share with you the level of my appreciation. There are no words. I can't explain it to you. Just know that you held my world together when it was quickly spinning out of control. Thank you for doing your job and doing it well.

I lie awake the last two nights haunted by it all. Truly, it haunts me. I prayed so hard that I would never see her like that again and yet we were reliving the worst day of my life. As I hit the wall, screamed out to my God for His help, and collapsed to the floor, you each kept working on her. Thank you for not giving up easily. Thank you. Forever, Dave and I will say thank you.

With all my heart, I sincerely say to each of you in her room that Friday morning, that we are grateful.

I couldn't give her up so far from home. I can't. Not without her daddy. Not without her brother's protective love. Not without Allie's kisses. I don't know how we will ever say good bye if we are asked to, but thank you for allowing us more time with our sweet Ashley Kate.

Goodnight

I'm praying tomorrow brings more healing for You and gets you one more step closer to home. Goodnight Gherkin. I love you.
Daddy

Roles reversed

Ash in in the OR. I am in the waiting room. Trish is in Longview with our older kids. We are both finding it hard to have our roles reversed. I pray all goes well in the OR and there are no surprises. Thank you all for being a part of Ashley's Story.
Dave

Prayer please

If anyone is awake I need two or more to be in prayer together. I can't get blood to draw from Ashley's line this morning. I need it to work so if you are stirring this early please join me. Thank You.
Dave

8/21/2010

Setteling in

This will be short because this hospital blocks access to our blog so I have to peck it out on my phone. Here goes. When we arrived here they had a poster hanging on the wall and all the staff had written encouraging welcome messages to Ash. Someone had purchased pink sheets and had them on the hospital bed for Ash. It really made us feel welcome. I was impressed. Most of what our Dr here received in report from Omaha turned out to be wring so settling in took longer than we expected. Trish and I took turns holding Ash down as she thrashed about the bed for several hours while they tried to find the right combination of meds to settle her. Was scary for a time as she was fighting hard to pull her breathing tube out. She is doing well now. Has had some trouble with her lungs and fluid on them. We don't expect much to be done for a few days as they just want to allow time for the swelling to reduce. Trish is heading home to be with our older kids tonight so I am just gonna hang out here with my favorite gherkin.

8/20/2010

Going to see my girls

As for me and my car keys, we are going to Shreveport LA to see my girls. ...and don't tell me how we should be in Nebraska and how we shouldn't have moved her and how we are selfish and not thinking about what is best for Ashley. I don't need your opinion. I am happy to go see my wife and Gherkin.

"Don't let the negative few outweigh the positive many." I don't remember when or where I first heard that but I have used that quote for years. I love it. It makes sense. It is not always easy to do but we still try. So to all those "positive many" out there thank you. Thank you for your prayers, thank you for comments and emails. The support of so many have really sustained us over the years. Thank you. As for the negative few. JUST STOP!!! If you don't have anything nice to say don't say anything at all. You can have whatever opionions you want of me, my family, and my wife. Just keep them to yourself. Trish and I don't need your lectures. I don't care. If you write a comment before you send it, read it. Put yourself in our shoes. If you don't think it will be uplifting or encouraging, DON'T SEND IT!!! If you think you can do this better great, just don't tell me about it. If you think we are doing it all wrong, again I don't care!! Don't tell us, keep it for yourself. If you don't like how we are doing this, STOP READING!!! Your comments are not helping!!! You have wounded my wife's heart and I am tired of it. Please Please Please just stop reading this journal. My daughter almost died last night. She pulled out the breathing tube and she almost died. She turned purple and went limp and almost died. Trish did not go to the journal and ask for prayers because she knows some *&^%#(^@ will have some stupid remark about how it was all her fault. You know what it wasn't Trish fault. None of this is. If you think we don't care about our Ashley and we are selfish your are out of your mind. If you don't think we are grateful to all the people who have saved Ashley's life time and time again. You are out of your mind. If you respond to this telling me how horrible I am again I just don't care. I DON'T WANT TO HEAR YOUR NEGATIVE CRAP ANYMORE!!!!

Starting Over

Wow. Thats all I can say.

In the next few days I will learn how to start over. This entire journal has got to find a new beginning. My heart breaks at the thought of it, but the journey that we are on is not easy and its only getting harder. Every day it gets harder and harder.

This has to end. It truly does. Most days its all I can do to even open my eyes. Having to read the words, the anger, the opinions, and the hatred directed my way over the past week is just too much. I don't understand how or why I can be hated so much by complete strangers. It is mind boggling. I would never say or type or treat others this way. Agree or disagree. Again I say, you don't have to come to this place. You don't.

I'm going to do my best to keep updating all of you who love us and love Ash. I am. I will figure out how. I just haven't come up with a solution today.

If you are family you will know. If you are a friend you will have access. If you have loved and prayed and supported our daughter through the years you will be allowed to continue reading along.

Give me a few days. There are A LOT of things going on. Ashley Kate is still in need of prayer. She desperately needs your prayers tomorrow morning. Those of you who don't pray, I'm not asking that you do. The whole purpose in this place over the last 4 years was for that purpose and that purpose alone.

There is no need to comment. Especially those who have nothing kind, uplifting, or encouraging to say. I don't need to read it. Not now. Not ever again. My heart has been injured for the last time from this journal.

I am not selfish because I want my daughter to grow up.

I am not shallow because I comb out her hair, dress her, and cover her with her own blankets.

I am not angry at the medical staff of this hospital or any hospital. Do I struggle with the procedures that Ash has to endure? Absolutely. YOU WOULD TO IF IT WERE YOUR CHILD.

I am not writing to entertain anyone.

I am not unworthy to be Ashley's mom because I love and am concerned about my other kids.

I am not sacrificing any of them.

I am not the one who chose this for our daughter. It was out of my hands. I'm not in control. I opened my heart to the child that God placed in it years before her birth and willingly said "yes" she's mine. I have loved her fiercely. I have fought for her life every single day since the day she was born. I did not walk away from her because she wasn't perfect. I am here. I hope to never be anywhere other than where she is.

If anyone knows how to filter this nonsense, how to take this precious place back from the ones who are destroying it, or has any ideas how I can begin again then I welcome them.

I love those of you who have loved us so very much. I truly do.

8/19/2010

A new Place


Wow, I pause to think of this new place we are in as parents and wonder how are we going to pull this off? Really, parenting Ash has always been a little on the unconventional side of things, but now? how are we going to do this? I'm a little scared, really intimidated, and not quite sure how our day to day life will be. The only thing I do know is that I love her, her daddy loves her, and we will take it one day at a time.

I look at the central line exiting her right side and stare. It looks just like a regular central line. A little longer and heavier, but still a central line. Uncoiled it extends to her knees. Yeah, not sure how moving around the house for her is going to work. They don't put hepatic lines in pediatric patients enough to even make a pediatric size line. Like I said, we are in a whole new place. The knowledge that it is tunneled through a large vein through her very sick, transplanted liver is the intimidating part. Wow, its dangerous. It really is. Do you know that a home health company wouldn't touch us with a ten foot pole. Like our physician said, "She has a line. Its what had to be done." So...we will adjust to the danger. We will learn to watch for the warning signs of internal bleeding. We will be careful.

How do you raise a child without a bowel? A whole new place for us. She is entering into an unknown territory and we are following right behind her. We will do this. I'm not sure how, but we will.

Re-transplant? Taking this journey and starting back at the beginning? If they will allow us to? Yeah, we are going to try. Look at her. We have to. She's amazing. She's precious. She's strong. She's a fighter. She's going to do this. She is. She has to string together 3 good, healthy, infection free, full months at home with no hospital stays and then we can return to "chat".

Knowing what we are up against is intimidating all in itself. Knowing who I am facing it with and for is making it ok. We are doing it for Ashley Kate. We are doing it all together. I'm not looking forward to the struggle or the process. I am looking forward to watching her grow up. Either way this road turns is going to take us to a whole new place. If we are blessed enough to get another transplant or if we take care of daughter for as many days as God allows its going to land us in a new place.

I'm afraid. I'm hoping that confidence will replace the fear. I don't know what tomorrow will bring. I don't even know what this afternoon will bring our way. I do know the One who does. Because of that I will wake up to face another day in this new place tomorrow.

8/18/2010

How Far Would You Go?

How far would you go? How hard would you fight? How much would you cry? How long would you try?

Dave and I would do ANYTHING.

ANYTHING in this world to give days like this back to our Ashley.

This is why we are doing what we are doing. Through all of the tears. Battling all of our fears. We are parenting our baby the only way we know how. With our everything.

Enjoy. I watch it every day and enjoy remembering what our life used to look like.


Failure

Everyone expected her to do great. She did not.

Everyone was ready. She was not.

I had nothing to do with the decision to remove her from the vent. Just sayin...cause I know some are thinking it. It was a decision made completely by the professionals. They are just as stunned as I am about today's events.

She failed and is now resting once again on the vent. The sounds of a machine pushing air in and out of her lungs are all that can be heard.

Failure at any level is devastating. Failure at this level is more devastating than I can even describe.

By the way...her blood gases are PERFECT! Explain that to me. Please.

P. E . S.

Ash was extubated. Don't rejoice yet.

She is struggling. Something called Post Extubation Stridors. Basically her air way is swelling from the trauma caused by having the tube down it. The easiest explanation is this: She is oxygenating well. She is not ventilating well.

She can maintain her oxygen sats easily with a small flow of oxygen through her nasal cannula. She can't blow off enough CO 2.

All signs that can be monitored to warrant removing a patient from the vent were "rockin". Absolutely text book perfect. This morning the intesivists shared with me that there is NO way to know if a person will be successful or not. You read the signs, the monitor, and blood gases. If its perfect, its perfect and you remove the tube. So we did.

Unfortunately, it doesn't look as though it is going to work. If she can't blow off CO 2 her heart will stop beating, her ability to breathe will cease. Metabolic acidosis will set in. Currently the swollen air way is keeping her from getting her breaths down into her lower lung in order to exhale fully and dispose of the CO 2. Currently her blood gases came back with her CO 2 in at 89. Normal is 40. This is not good.

We are using a high flow nasal cannula, heliox(a mixture of helium and oxygen), and epi treatments. If things don't settle down soon, we will re-intubate her. ( By tonight or definitely in the morning.) Try again in a few days after they have loaded her up on steroids to try and reduce the trauma and swelling.

Its a dangerous place we live in with our sweet Ashley. Nothing we do is cost free. It all runs at very high risks. I desperately wish to change things for her. I just don't get too. Prayers, prayers, and more prayers. I don't know what else to say or do.

Oh, by the way, the meeting had to be cancelled.

This morning...


...we hope to eliminate all of this.

The plan is to take Ashley Kate off of the ventilator sometime this morning. Her respiration's are a little higher than ideal, but she is completely breathing over the vent settings and needs to be extubated. Her upper right lobe can't effectively open up with the pressure the vent is set to give. She will have to be off the vent, sitting up, coughing and receiving c-pap therapy to open it up and oxygenate well. I know she will be on some oxygen, but a nasal cannula is so much better than what you see here.

Ashley's wounds are all healing very nicely. At this time I can clean, pack and dress all of them with little to no discomfort. The only wound that is causing her pain is her foot. It is very, very painful and I know I will be hearing her cries once the tube is taken out of her throat. We really have no idea what the injury is going to look like as time goes on. Currently it has filled with fluid and appears to be the biggest blister ever on the history books of blisters, but this is just a guess as to what it actually is. Wound consults gave us very little instruction. They just don't know what to do with it. Many, many "injustices?", "mistakes?", "poor decisions?" led to the injury that night. Its a day I would like to forget ever took place, but the size of the wound and the pain it is causing her makes it so hard to forget.

Her abdominal drain is putting very little out, making me hopeful that we have effectively removed the fluid in the cavity. I don't know if it will remain or be removed. I just don't know. I'm going to discuss it in rounds today.

The meeting this afternoon is important. I hope to have solid answers and direction as a result of it. I hope.

Finally, this journal may be called "Ashley's Story", but truthfully it should be titled "Our story". Its not about a little girl, but more about the impact that little girl has had on her family and those who love her. Sorry. It was written for our family. The world has been allowed to follow along, but originally it was to share our experiences with our extended family. No need to comment, just putting it out there. No one upset me, its just been mentioned several times that we should only be talking about Ashley here and not about our family through the journey. It is impossible to separate Ash from anyone of the 5 of us. She is part of our family and her hurts, struggles, triumphs, and success' belong to each one of us. Again, I'm not upset...but I am telling you that I will continue to journal the experience this has on each of us honestly, accurately, and non- edited.. I won't monitor my heart or my words to please those who think I should leave Dave, Blake, Allie, or my own experience, feelings, struggles, and hurts out of it.

Love you guys. I appreciate your presence so very much. Each of you who pray for our Ashley are making a difference. To think where she might be if no one ever lifted her to the Father. Thank you for loving us the way that you do. For wanting to defend us and protect our hearts. You all have touched our hearts and we are not the same because of the precious words you share. Thank you so much.

8/17/2010

Wounded


My heart can hardly bare the sight of her wound. It is so severe. So painful. So unnecessary.

We have all been wounded so deeply by the events of the last 6 weeks. I don't know that our family will ever recover from these wounds, but I know that we will try.

At this time Dave and I desperately want to bring our family back together. A wound left unattended will only become more disastrous. I feel that if we don't tend the wounds in the hearts of our children and in our own hearts as well that we will be left with only disaster.

My hope is that tomorrow healing will begin. My hope is that tomorrow she will have the breathing tube removed from her throat and that her lungs will fill with air and expand on their own. My hope is that our hearts will be heard. A plan will be made for discharge. A date will be set to return.


I have a responsibility. One of my deepest wounds is the knowledge that my children and my husband are hurting because of our absence. I'm raising a family. I need to do my job. Ashley's health, her wounds, her heart are my priority. So are the wounded hearts of my husband, my son, and my oldest daughter. God please heal our wounds. Allow us to be together soon. Allow me to do all that You have asked of me, all that I am called to do. Heal our Ashley. Bring her home.

Our wounds are deep. We are all struggling. Mostly and more severely than the rest of us, is our sweet Ashley Kate.

Good Morning Beautiful!

In the early morning hours our sweet Ashley began to wake up. We didn't sleep much with lots of commotion going on around her, but little by little she started to move here and there. This morning she opened her beautiful eyes. She's made progress overnight. The only thing holding her back is the collapse of her right upper lobe. This morning they realized the placement of her breathing tube had shifted and was not oxygenating both lungs. As a result we have some collapse and she is now requiring a little more respiratory therapy. The thought process in rounds was that it was all up to her at this point. It could be as early as tomorrow or later on in the week. Biggest concern was fluid weight increasing. She is back up to 19.6 kilos. We are using diuretics to pull of a little each day proceeded with albumin infusions.

The transplant team called a meeting for tomorrow with me included=) Their idea not mine. We are beginning to lay out yet another plan for home. We have a line. Now she just has to breathe on her own and then we plan on taking her home. I'm hopeful it will be accomplished. Lots of planning and logistics to get worked out to make the transition as easy as possible.


The wound on Ashley's foot is horrible. Really it is. Thankfully we see signs of life in the tissue and it did not die from lack of blood supply. I think we are realistically looking at a couple of months before it heals. I'm just so grateful the tissue has blood supply to it. Yesterday this remained an unknown. The pain from the injury is great. Its bothering her even through the massive amounts of narcotic.

I know many mistakes have been made over the last 6 weeks with Ashley's care. Trust me Dave and I know better than anyone else. This is precisely why we firmly believe Ashley will be the safest over the next few months in our home. A hospital is a place to come to for treatment, its not a place to live. Our firm stand on this issue is what causes the most criticism of us on this journal. So...I guess I'm just going to say that its ok if you disagree with us. Maybe you would do things differently. Maybe you wouldn't. I think its hard to know until your facing what we are facing. Human error. It can happen just as easily at home with Dave and I caring for Ash, but the amount of "human error" will be drastically reduced just because she won't have the same amount of people touching her and caring for her. Agree or not, she's going to be safer in our home for the upcoming days, weeks, and months. Our goal is to string together 3 good months before we start "calling to chat". I have no issues with forgiveness. NO ONE in this institution is trying to harm our baby. We KNOW this. Forgetting is my problem. We are all human, we are going to make mistakes. Mistakes that cause great harm and suffering at times. Its having the ability to forget at what hands these mistakes are being made is where I'm struggling. I don't want to place her in the care of those same hands. There are members of this staff that I trust with her life. There are others I do not. There are some with whom I did and no longer can. That's being honest. As her parents we are ultimately responsible for what happens to Ashley Kate and we are the ones who have to live with the heaviness of our decisions. Its not an easy place to live.

Ultimately we are fighting for a quality of life for Ashley. Never forgetting that she is fragile and very ill, but just as importantly remembering she is a little girl with feelings and a right to be happy.

As my sweet friend always says, "I'm just sayin...

8/16/2010

Riding the Vent


Ash is still out. All paralytics and sedation have been turned off for hours and hours, but yet our sweet girl still does what is called "riding the vent". She is making no attempt to breathe on her own. She's not initiating any breaths and not breathing over at all. I'm disheartened as I watch the monitor on the ventilator. The only comfort I find is that she is at rest and not struggling as she did last night. Perhaps there is great healing going on inside of her tiny body?

Still she is breathtaking.

Oh, how I love our daughter. I love her so very much.

I don't even know...

how to tell you about today and the events that have taken place. My mind is tired, my heart heavy. Its been a very, very, very long day and it has not been easy on any of us. Not my sweet Ashley, my precious husband doing his very best to get through today in the office knowing all she was enduring, my big kids at our home alone, my good friends who had to witness more today than I'm sure they thought they were signing up for.

It went from bad, to worse, to can it really have happened.

I'm so tired. I'll just spit out the facts and leave the emotion bottled up. If I shed another tear today...never mind. It doesn't matter what I think would happen to me. All that matters is that my baby girl is lying behind me, alive, with a heart still beating, and a machine filling her lungs with air.

Facts:

Ash has a line. Its a hepatic line. The one we all had hoped could be avoided. It could not. Its all she's got. We are on the last leg of venous access for our Ashley.2 and 1/2 hours into surgery, they got it placed through her liver and threaded up toward her vena cava.

Ash came back unable to breathe. Even on the ventilator. The machine could not fill her lungs with any volume. They hand bagged her for more than 30 minutes. 3 different people took over the bag as others bag suctioned her, shot x-rays, and held their breath. Her vent setting all went back up and we are starting over with a collapsed right lung. I stared at the monitors for as long as I could watching a bag and sets of hands force air into her lungs, then I stepped into the hall and cried.

Ashley's 2 IV's on her right foot were unwrapped and a very dangerous injury was discovered. The wrapping of the IV's cut off the circulation to the heel portion of her foot. The screaming and thrashing around last night was her attempt to tell them all that something was wrong. I even stepped out into the hall asked for it to be unwrapped, discussed how she was showing us something wasn't right and nothing was done. No one knows, not the ICU Nurse Practitioner, not the ICU intensivist, not the transplant surgeon, not our nurse, nor the wound nurse knows what is going to happen. We have to wait and see. Its disgusting to realize the extent of her suffering over the night. My heart is broken for her. Ashley is highly intelligent and knows how to show us when something is wrong. She is often misunderstood and even ignored since she can't talk. Being on the vent only complicated her ability to communicate. She was eventually drugged to a level that she became unconscious and slept through the pain. To say that my husband is angry over this senseless injury is an understatement. We are all angry. Including the transplant surgeon and fellow. It was a mistake, but is was unnecessary and now she suffers.

So much has taken place today, but I don't have the energy to write. Maybe later in the night, but for now I'm going to try and close my eyes while my sweet baby still lies still from the paralytic and sedation in her system.

I think the hardest part for me in all of today was when the physician looked at me and said, "We've got a line. It was either put it in the liver or let her die. So today is a good day. We got one." How am I to celebrate that? I walked down the hallways back toward our door with my heart pounding out of my chest and the words echoing in my ears. It was our only option. She really is going to die without a miracle. With that thought piercing my soul tonight I'm going to say goodnight. I'm hoping for a quiet night of healing for my sweet baby.

No Word

Ashley Kate has been in procedure for an hour and a half now. No word or update on how things are going. So much to talk about whats going on I just don't have the ability or peace of mind to get into it right now.


An anesthesiologist was not available so they have her nurse, a respiratory therapist, the IR nurse, and the IR doc working on her at this time.


They were discussing a trans lumbar line? Never heard of it before. Its getting crazy around here. Doing everything that can be done to try and give her a chance at re-transplant.

Your prayers are encouraging us at this time.

Hospital Time

Ash is still lying in her room, in the bed, without a line. We are working on hospital time. No word about when we are actually going down. Last night we were assured it would be 6am. My nerves are shot, my stomach in upset, I'm so nauseated. I just want this over with and I wanted her down there before the morning shift arrived. I don't want Ash to be stuck for labs this morning when they can do it once she is asleep for line placement. I don't want her moved around for x-ray while she is uncomfortable and miserable. Our nurse is in total agreement and sent everyone away before I even mentioned it. But...now the day shift is here and none of that has been done and who knows how long we can fight them off. If they had seen all she went through last night they would be on board with our plan. They need to get her down there and get this done.

Two of my closest friends in Omaha are here. One of them stayed up all night long standing next to Ash's bed while I slept in the recliner. She still has yet to close her eyes. The other got up at 4am, secured a sitter for her own babies and is here with us now. I'm not alone. They are amazing and selfless and such a blessing in my life. Such a blessing.

Your prayers for us today are so appreciated. I will update once something happens. Our hope is for a tunneled femoral broviac. That is exactly what we hope for. A hepatic line is acceptable, but its not what we want. Its our last resort, only acceptable if its all we have left. Its a dangerous solution to where we currently are.

8/15/2010

7 more hours

Things are crazy. They would not come in to take Ash down to surgery tonight. Instead they asked the fellow to try and re-wire her triple lumen. After 5 sticks she looked at me and said, "I think we've lost the vein. I'm sorry. She's already got a hematoma forming and its not going to be good."


This femoral vein was our best chance at getting a tunneled central line into her body. My heart is sick. The fellow's is too. I have no idea what is going to happen in the morning without this vein.

They quit trying, then placed 2 peripheral IVs into her foot. The same foot. She is screaming on the vent. Her eyes are crying and her mouth is screaming only there is nothing coming out because of the breathing tube. Ashley is can feel everything that is running into her tiny veins. Her peripheral veins are shot after continuous use. They are thin and fragile and horrible. You can see the pain on her face. They are trying everything to try and get her sedated, but nothing has worked yet.

I wish they would have come in tonight. I wish they would have made it happen. Instead we (3 of us) are standing by her bed holding her down and trying to manage tubing coming off of the 2 IVs so that she doesn't get them pulled out. She is scheduled for surgery at 6am.

Pray that a permanent solution is found while she is down there. I don't have any idea how they are even going to get her sedated enough to endure the procedure. I don't know that they will even find a vein to get into. I have to sign consent for them to attempt a hepatic line that will be tunneled through her transplanted liver. Her very, sick transplanted liver. In case nothing else can be found. I'm a nervous wreck. We have 7 more hours to get through. Then we have the procedure itself and the recovery.

7 more hours of watching her silent screams. My heart is sick.

Lost

Update: No one wants to call the attending. No one wants to come in and take her into Interventional on a Sunday night. No one wants to mess with this at this time. So... guess what? I don't want any of this either. All I know is that she has to have access and at this time we don't have any. All of her sedation drips have been turned off. She is going to wake up if they don't hurry and decide what can be done. I'm trying to stay calm, but...If this baby wakes up its going to get bad. REALLY BAD.


Ashley Kate's triple lumen was just lost. Calls have been placed to the resident and the fellow. It looks as though she may be going down tonight to have some type of line placed. Not sure what is going to happen. Its not acceptable for her to be intubated without some form of sedation and at this time we have no way to give it to her. This road just gets longer and longer and longer. I have no idea what is going to happen now.

A better Day

Yesterday was hard. Today is better.

Yesterday I couldn't function. Today I am.

Yesterday I sat and stared and could not move. Today I'm up, awake, and facing the challenges set before us.

Yesterday I napped off and on in the chair as my dear friend stood beside Ashley Kate's bed and kept a watchful eye on her. Today I'm rested.

Yesterday I drug myself down the hall, to the community shower, and stood still as the water trickled down my cheeks and mixed with my tears. Today I have yet to shed any.

Yesterday I could not believe we were back in this place. Today I woke up knowing that yes, we were really here.

Yesterday I felt numb. From my fingers down to my toes. Today I'm alive. No longer stunned, or numb, or speechless.

Ashley Kate made no progress on the ventilator over Friday evening. As a matter of fact things only got worse. Higher settings, more pressure, requiring lots of support. Last night she began to turn around and we have been successfully weaning several vent settings every 6 hours. Her chest x-ray is not perfect, but its improved. Last night we bathed her. Washed and braided her hair. Lifted her limp body from one bed onto another. We dressed her. Finally figuring out how to keep her from lying there naked, exposed, and humiliated for every professional to see. I took a pair of scissors to the back of all her gowns. I split them up the middle from the hem to the neck and made "hospital gowns" out of all her own clothing. I then slipped her arms into the sleeves and gently spread them across her body allowing her to once again look like herself. As much as she possibly can in this situation at least. Its important for me to maintain her dignity. She is a little girl who deserves to be looked upon as one, treated as one, and dressed as one. The first smile I had felt in days crept across my face as I looked at her lying there covered in her nightgown. She is still so very beautiful!

On rounds this morning we set another plan in motion. Knowing all along that things can change in an instant, but its still nice to have a direction to follow. Her cultures show no growth from the fluid draining out of her abdominal cavity. The surgeon stated, "Thats good and bad" I was confused. Good I get. Bad I didn't. She feels that something is hiding from us. We had no choice but to cover her in strong antibiotic coverage, but it is probably keeping us from finding the source of her infections. She shared with me it was "scary" not knowing what was causing her to be sick last week. But, we are proceeding anyway. Ashley Kate requires a permanent central line placement. Tomorrow they are trying to schedule this to be done(it may not happen till Tuesday). We all want to take her while she is already on the ventilator as opposed to her healing, coming off, going back down, placing another breathing tube, and exposing her to more trauma. Although it is frightening, Dave and I are convinced this is the safest plan for her. The team is on the same page agreeing that it has to be done and now is the time. So...we are going back down to Interventional Radiology sometime tomorrow. The hope is that after she recovers she might be able to be weaned off of the ventilator on Tuesday or Wednesday. All of us are hopeful she will continue to improve and maintain her current schedule of weaning.


We also plan on checking the status of the fluids tomorrow afternoon by ultrasound. Ultimately helping them to decide if she will require more drains to be placed or not.


So overall its a better day. Ash is still intubated, but stable. She still has pockets of fluid inside of her abdominal cavity, but they are draining less and less every hour. She has been fever free. She is here. Asleep, but still with us. Our kid is tough. As tough as I've ever seen and deep inside of my heart I know she can do this. She can do it all. Heal her up, send her home, evaluate her, list her, call her back, and lets do this again. Only then will she get her life back. I believe she has a life ahead of her just waiting for her to live it. Our normal days have slipped away for a while, but I think we can find them again. It may take a year of more to get through all of this, but once she does we will live each day of normal, mundane, like it was the best day of her life. You wait and see.

When Words Fail

I found myself in the shower praying again. Its a habit I developed almost 4 years ago when Ash and I began our first days of this transplant journey together. It was the only place I found to be quiet or safe or private. The habit stuck with me long after we made it home. I've continued to find peace as I stand with the water running down my face. Its usually the place I cry my hardest and pray the loudest.

I can't seem to find the words to pray what I want to say. I'm not even sure I know what I want to say the Lord anymore. I just know I want to talk to Him. So I stand under the water and wait. Wait for words to come and some days the do and some days they don't. Honestly, the last time I verbalized to Him what I wanted to say I stopped as soon as the words fell out of my mouth. I gasped and cried and hated myself for what I found myself saying. I'm going to share those thoughts with you tonight. Share them only because I don't know how I feel about the way I'm feeling and so spitting them onto this screen may help me learn to accept the new place, the horribly familiar place I have found myself in again.

As I prayed for the Lord to prepare the path, the hearts, the family...I stopped. Realizing in that moment that I hated myself for praying such things. Yet, how else am I supposed to pray? What else would a mother do who is watching the very life of her daughter teeter on the edge of life and death? Knowing that without the words of this prayer being spoken that she may actually leave my arms and go on to His? Who does this? Who prays for such things? How disgusting is this place in my life that I am currently living in? I don't have the words. I can't find them? How do I pray that another mother in her worst moments would have the heart to share her child with mine? How do I pray that my worst nightmares become hers instead? What kind of person does this?

I am broken. So very broken. Words fail me tonight. I am empty and my prayers are hollow. My heart aches and I am ashamed that I would even ask the Father to allow my daughter to live and another's to die. I hate transplant. I hate transplant hell. Its truly where I have found us again. Yet, its the only chance she has left. Its the only life she's ever known. The only way to restore to her what she knew as happiness.

I sit across the room from our sweet, precious Ashley tonight. No longer allowed to have my recliner pulled close to her bed. I can stand over her and kiss her tiny hands, rub her swollen feet, touch her long hair but I can't hold her. The only thing I could do to feel close to her the last 5 weeks was to lie next to her at night and watch her breathe. Tonight all I see is the rise and fall of her chest as the machine that has taken the place of my recliner forces air into those tiny lungs. How did this happen? Did the last 36 hours truly happen? Did the last 5 weeks really and truly take place?

God, please restore our life. Please take us back to where we are loved. Please allow us to sleep in our rooms and not these in this PICU. Please let me walk the halls of our home checking on our children each night and not the halls of this hospital as I wake. I miss home. I miss Dave. I miss Blake and Allie. I miss Ashley Kate. I miss my grateful heart. I miss the peace I find inside the walls of our home. I miss the laughter from the play room. I miss the noise of the game. I miss the silliness of our family. I miss the safety I find in being close to Dave. I miss the knowledge that inside her body rests the priceless pieces of another's and I wonder if it will ever hold such a gift again.

8/14/2010

Trust

This was our beautiful 5 year old baby, breathing all on her own, oxygen saturation's 98%, clear lungs, amazing chest x-ray on Thursday, August 12, 2010. I trusted this child, this irreplaceable child, the one I would lay my life down for if only she could keep hers, to a group of radiologists and anesthesiologists because I was told I had to. I signed consent for a 10 minute procedure expecting her airway to be secured. The anesthesiologist returned to the pre-op room, told me since the procedure was expected to be so quick that she would just sedate her and monitor her vitals as the drain was being placed. I breathed a naive sigh of relief and thought to myself, "ok, this one isn't going to be so bad". How foolish I was!



This is my beautiful 5 year old baby, who was returned to me last night, from interventional radiology with a drain extending out of her lower abdomen. She was also returned to me in this condition, no longer breathing on her own, or with a clear chest x-ray, but instead with a tube shoved down her throat, with an explanation that sent chills down my spine. Ashley Kate's oxygen saturation's instantly dropped from 97ish% to 80%, they increased her oxygen flow through a nasal cannula that had been placed and it made no difference. They began to hand bag breaths into her lungs which had become very "tight". It was difficult to get them to expand with the forced air. They looked down and saw a green fluid dripping out one side of her mouth. Instantly they knew she had aspirated stomach content during the procedure. They suctioned out her mouth, placed a tube down her throat, and returned our baby to me in this condition.



When I type that words do not express what my heart needs to share I honestly mean that. Last night I was told she would only need to be supported through the night and that they would expect to extubate her first thing this morning. It is not to be. Even though they thought she just need to have her metabolic acidosis issues resolved, they were mistaken. This was and is a respiratory failure intubation. She can no longer breathe on her own. She will remain on the vent until the time comes that she can be weaned from the high settings she began to require overnight.

There continue to be a few readers who almost sound "gleeful" in the words that they type to me when life becomes more painful that words can ever describe for my family. I assure you this morning that if I could block you from ever opening the pages of this sacred journal again that I would. The poison that you spew toward me is not necessary. I feel as though you are on a "death watch" and that if that moment ever comes and the life of my daughter is lost that then and only then will you be satisfied. I have never met you. I have no idea why you take such joy in my pain. If I had lost all sense of who I am(which I assure is slipping from my grasp) I would call you out, publish your comments publicly and allow the supporters of my family to handle this for me. Still, although I don't feel you deserve it, I will try and handle you with grace. It is taking all sense of my decency to do so.

The trust that I placed in the hands of this team of professionals is slipping from my grasp. That is honest. They know that. We discuss it openly. I respect them. I admire them. I still need them. I say all of that to let you know that there will come a day that Dave and I place our most precious Ashley on a plane and leave this place. We will only return to it if they decide to give her another chance by re-transplanting organs into her body. At this time I have agreed to remain until she is once again stabilized, breathing on her own, and a line has been placed into her body. At that time, she will be transferred back to our team in Shreveport. I trust them. They love my daughter. I 've seen it in there eyes. We are doing the very best we can in the worst of situations for our family. We are being attacked from every angle, and I do not understand where our God is at this time. Let me assure you that I know He is near, I just can't see His face through my tears. Your prayers for my husband and I as we try and hold our family together would mean more to me than almost anything on this earth. Being trumped only by your prayers for my sweet Ashley.

I trust you with my heart. I trust you with her story. I trust you to try and find HIS story and HIS face through her journey and her pain. It is only because I trust those of you who love her that I will remain the story teller on this journal. My heart can't take much more of the poisonous words of those who seem to hate us. I don't trust that they love my baby. I just don't.

8/13/2010

Tears

A ten minute procedure to drain fluid from Ashley's abdominal cavity has had disastrous results. Ashley Kate is now on the ventilator unable to breathe on her own. Ask me why I have fought so hard to get her out and back toward home? I dare you to look at my daughter tonight. I dare you to and then ask me that again.

One procedure leads to another to another to another. Eventually someone makes a mistake. The person who pays is innocent. She lies across the room from me now and a tube shoved into her throat forces air into her lungs to keep her alive. I reminded the surgeon that I've only got one of her. There is not another Ashley. She's not replaceable.

This is our reality. Our worst nightmares have come true.


I just don't have the energy to share my heart, my hurts, or my hopes tonight. My insides are shaking. My nerves are shot. My everything hurts. My daughter is hurting. I can't even imagine what our tomorrows will bring.

Some one reminded me that HE is collecting all of my tears. I wonder if the ones from Ashley Kate's swollen eyes were collected tonight too? As she fought as hard as she could against the drugs, the sedation, the tube, and those holding her down the tears slipped from her eyes and they pierced my very soul. She was afraid. So very afraid. I'll never forget those tears. They have marked my heart forever. Who collected her tears tonight?