Ashley's Story

She will leave fingerprints all over your heart

7/31/2010

Sinking In



Little by little it is beginning to sink in. Ash is in the most difficult place in her short life. Never has she lay without a bowel. No bowel, no transplanted organ. Just an empty space inside her abdominal cavity. I'm not sure how this works. I know a few children who have been in this condition before, I just don't know of any who have been here without access sites. Today nothing was done to secure a sight. No ideas. No real direction. We are just sitting and waiting while someone tries to develop a plan.
She currently has a very short triple lumen threaded into her right femoral vein. This is enabling us to support her through her recovery. She looks good. Not the old Ash, but so much better than the one who has been suffering the past few weeks as we attempted to stop this process with Thymoglobulin. We had a 50-50 chance at being successful. We just happened to land in the wrong 50. Its sad. It really and truly is. The obstacles before us are bigger than we have ever faced, but face them we will. For as long as the Lord allows her to breathe we will take them on one at a time and try to give Ashley Kate a chance at growing up. My heart is sick at the thought of not succeeding and I am trying to focus on today not what tomorrow holds. Today she is here.
She is open from top to bottom. She has 6 wounds on her torso. Some major, some minor, some infected, some draining. All requiring different dressings to be applied throughout the day. She is doing the very best she can under these circumstances. She is in pain. A lot of pain, but compared to unrelenting pain she was in prior to last nights ex0plant she is improved. She and I slept this afternoon. 4 long hours of uninterrupted sleep. The most we have had consecutively in a month. I woke up to find that just as Dave is experiencing the nightmares don't go away when our eyes open. This is real. This has happened to our Ashley. We are going to figure this life that we have been thrown into out. Together we will figure out how to stumble our way through no matter what happens.
I did speak to both of the older children this afternoon. They are shocked. Surprised that we had them remove the organ we so desperately need for her. I assured them she was doing better without it today than she was with it the previous 2o something. Its scary. It scares Dave and I so how could it not frighten Blake and Allie? We did not talk about all the details, we just assured them she was ok today and that we would bring her home as soon as we could.
I guess today I'm just grateful. Grateful that she woke up. Grateful that she survived this far. Grateful that my girl is here for me to touch, to kiss, to love. As long as she's still here then there is at least some hope that God is still working in her life. He is. As hard as the struggle I'm having with Him is, I trust that He is at work. I just hold my breath a little as I wait to see what He is going to do next.
We've got a journey ahead of us. I always thought we had the journey behind us, but now I realize its never going to end. Its not. Our goal for our daughter has and always will be a life full of quality moments and memories that can never be replaced. My hearts desire is to have more of the same with our sweet Ashley. He granted my hearts desire the day He handed her to us. I know He cares. As badly as I hurt at this time in my life, I do know that He cares. I hope and pray that He doesn't take her out of our hands and back into His. Just a while longer. I need her a little while longer.
The next week will be a daily struggle as we watch her fight her way back to being strong. She is at a very high risk of infection due to the nature of this surgery, but so far she looks good. Her vitals are very, very strong. Her kidneys are functioning. Her blood pressure is good. She is still on oxygen and fighting it every step of the way, but I think its because her abdomen has a 7 inch incision that is still opened. Breathing deeply is very difficult right now. Our expectation is that as the incisional pain begins to improve over the next few days that her oxygen requirements will cease. She has been fever free and after 24 hours that is a good sign. Your prayers that she remains this way are so appreciated. Ash has a new ostomy sight. It is on the other side of her body and up very high. Because of its placement it will be impossible for Ash to wear any type of clothing other than dresses. As I stared at her new appearance this morning I just let that sink in. I guess I'm ok with that. I mean, at least shes a girl and not a boy, right?
Its a whole new life with a lot of things to figure out, but its life. For now its all I've asked Him for. Her life.

Finding Rest

Ashley is finding more rest this morning than she has in weeks. She is not screaming and crying in pain. It is hard to believe that removing the organ we fought so long and hard to protect was the right decesion but seeing a bit of sparkle in her eyes this morning is a HUGE blessing to this Mommy and Daddy. We have just removed her arm restraints to see if she can be trusted. She assumed the classic Ashley pose with legs crossed and both arms behind her head. It's those little things that confirm to us that she is feeling better and on her way back. Her central line had to be removed because it was not working properly. While they were removing the line and not paying attention she pulled the nasogastric tube our of her nose and handed it to them. I love that she plays by her own rules. Ash lives by the motto "Rules are meant to be broken" and I love it. We have to have a central line now because she is 100% TPN (IV nutrition) dependant and we really don't have a plan for how to get one. We are going to wait through the weekend and allow her to rest and then talk about a plan for placing a new line. But around here plans can change in a heartbeat so we really don't know. Thank you so much for praying with us through the night.

Numb

We are. An absolute feeling of nothing at this very moment. I think Dave and I are both trying to come to terms with the fact that our baby has no intestine. None. How does that happen? Is this even real? I would have never dreamed that we would only be transplanted for 3 years and 10 months. Its devastating. Truly it is. How do we live this life? I've never been in this place before and its such a foreign land. There is no transplant. Its gone.

Tonight I have cried harder than I ever have. I literally vomited again and again. I've often felt a physical illness deep inside of me when my Ashley is struggling, but tonight I could not contain the feeling. The call came out an hour after being intubated that no arterial access could be found yet and she couldn't be opened up until it had and I became so sick. I remained very uneasy and my stomach very unsettled and then my sisters and my brother arrived. Along with my tears I have laughed. I laughed hard. Then I would cry hard. Then I would be sick. Then they would have me laughing again. My emotions are all over the place. You never know when they wheel her away from you if she is ever coming back. It is the most helpless I have ever been and it has happened to me time and time again.

I sat in that waiting room and relived the night of her transplant. We had such hope. We were scared, but the hope that was within our grasp got us through the night. Tonight it was devastating. There was no hope. There still is none. We are facing life without an organ and life with an organ that is already suffering from the very disease that caused us to transplant in the first place. Its very bleak if you think about it, but I'm trying so hard not too. At this time the team will not even discuss the possibility of trying again. 6months is what we are being told before we can even talk.

It is so surreal to be sitting in the very chair that you sat in 4 years ago, but yet have very different outcomes. Its not really happening is all I kept thinking. We've done this before...except...we did it in reverse. We gave her something then...tonight we took something from her. Will I ever be able to live with the knowledge that I allowed them to give up? That I gave up this bowel? I willing put her through this massive operation, but yet she was suffering to such an extent that I couldn't watch her endure it for even one more day. Did this really just happen? Is she really lying behind me on a hospital bed, arms restrained and tied down, with an open wound the entire length of her torso? We are doing this again? An art line? Again? A triple lumen coming out of her groin? Again? Please wake me up. Please. Our baby's life has been changed. Drastically changed. She will never be the same again. My hope, my prayer, my plea is that somewhere we will see her joy come back. Her smile, her twinkly eyes. Please God let these return. We traded her bowel for a chance to see her happy if even for a short time. I could have offered her a life of pain or a life with the chance to feel good again for a little while. I chose the latter. I had to. Please understand that as her mommy I couldn't do anything else. Her cries were breaking us in two. Her body was stretching to its limits before my very eyes. Her bowel was going to explode. It was just a matter of time unless God gave us that miracle. I hope I didn't give up too soon. What if that miracle would have taken place tomorrow? Or the next day? I don't know what was right. I'm being haunted tonight.

We've lost her central line through this process tonight. I can't even talk about it at this time. Just know that today will be very, very crucial to her life span. Without a central line our daughter will not survive. She can't. She has no bowel. She is once again TPN dependent. I think they are taking her back in sometime today.

I know I'm rambling. I am. So many thoughts are swirling around in my head. I'm exhausted and scared and relieved and unsure. I can't tell you what tomorrow holds for my daughter or for our family. I just tell you that God has surrounded us with such amazing people. You are ministering to us with your support and your prayers and even your tears for our gherkin. I can never thank the women who stood by me as I sobbed over her body in pre-op enough. I can never tell my siblings how very much their presence in this place next to us means to Dave and I. There really are no words to describe seeing that much love in action. So selfless. So supportive. So amazing. I am blessed. Kathy, Toni, Chuck you will just never, ever know how very much I love you for being here. From my heart to each one of yours I say thank you. You are blessing me by loving my baby.

Update

She isn't messing around with all this mess. She is off the vent and happy to be so.

Update

She is awake and asking for a drink. I don't think anyone was expecting that. She is one tough Gherkin. I don't think she is going to stand for this vent tonight. All her numbers vitals etc. are looking really good so I think they are going to pull the vent now.

Update

Ash just got back in her room. I was right about that hospital time thing... Trish will update later.

Update...

The bowel has been explanted and they are now making a new ostomy. They said she should be back in her room in about 30 minutes. (30 min hospital time = 45min - 2 hours real time). Will update when we see her.

7/30/2010

Surgery Update

They have called out here three times. The first time they told us they were having a hard time getting an arterial line in place so they had not started the surgery yet. The second call was to tell us they had the art line in place but had to put it in the femoral (leg) artery. Not very good news, we didn't want to hear that. They just called and said that there is alot of scar tissue and so the bowel is not coming out very easily and they could not give us any kind of timeline. So we wait....and we pray. Thank you so much for all who are joining us in prayer tonight.

They just took her

Ash just went into surgery. Dave made it about ten minutes before they took her. Such a blessing to know he was able to see her. They plan to be ready to open her in about 45 minutes. They will call to update us throughout the procedure. She will be kept on the vent and taken directly to our room. Thank you for praying for our pickle

Scheduled

Ashley is on the surgery schedule. She's just behind everyone else. That means that all cases have to be wrapped up before she goes. Her surgeons entire scheduled was bumped back several hours due to some other circumstances. At this time we are looking at any time between 6-8.

Dave is on his way. Should be here around 8:30.

Dr.G stopped by, assured me I could trust this week's surgeon, and let me know this was the only option to give her any chance at living. "We tried. We gave it everything we could. There is nothing left of this bowel that is salvageable. This is her only chance. Your doing the right thing." I hope she's right. I pray she is.

We have to get her through this without an infection, get her off of the vent, and protect her kidneys. These are the objectives. Anything else is going to get really, really ugly.

Ash will be 5 in 5 days. 5 years is amazing. Still humbling to think that my girl, our tiny pickle, is turning 5 years old. I'm very grateful for those years and I'm holding on to the hope that some how God wants to grant us at least 5 more.

My brother and two sisters are on the road, Dave is in the air. We are going to be alright. Prayers for my baby. For my big kids. For our family. You are all so amazing to care as much as you do about our girl. Thank you so very much. Sincerely, I thank you.

Hang on sweet Ash. You can do this. I know you can do this.

Its Quality We Want

To be honest its her LIFE that I WANT, but I don't get to decide that. So I'm deciding to give her a shot at quality for the remainder of her life because its the only compassionate thing I can do for my daughter.

We are going to remove Ashley's transplanted bowel this afternoon. Its the only option that is even acceptable at this time. My other choice was to keep her sedated for the rest of her life. "Snowed" was the actual word the surgeon used this morning. That's not living. Ashley deserves to live. Happy, pain free, comfortable. Even if its for only a short time. I want to restore her joy.

The operation is HIGH RISK. There are no easy procedures left in her life. They can't promise me anything. They don't know if she'll be here tomorrow, next Wednesday when she is to turn 5, or a next month. Without line access we have come to the end of the multiple choices. We don't have any other choices.

Your prayers that Ash might come through this procedure infection free are of the upmost importance. Her greatest risk in removal of the bowel is the escape of its content into her abdominal cavity which would lead to an infectious bout of sepsis and without line access we could not support her through this. Its the scariest day of my life. So much worse today than the day I placed my tiny girl in their arms for transplant. We are out of options.

The pain can't continue. She's not living. She's enduring. Its not acceptable. This is the only thing I can do to try and bring her back to her life, to our home, and to herself.

I can't get a hold of Dave. He's out with Blake and his friends this morning and although he knew we were close to making this decision I still wanted to share with him that this is what it has come to. He needs to know. We have some time. Two cases before her. If you see my husband this morning please ask him to call me. I can't get him to answer his or Blake's phone.

"Every Day...

...I wake up I keep hoping she's going to be better. Then when I see her I know she is not." - Allison Brooke Adams

Never have any truer words been spoken. This hospital admission has been one bad nightmare after another. It seems to never end. Each day something else goes wrong, more problems are discovered, and our Ashley slips further and further away from who she was a few short weeks ago. My heart is breaking for my daughter. How many times can I say that? How broken does it need to be for whatever this "purpose" is to be accomplished? "I'M BROKEN, I'M HERE. WHATEVER IT IS THAT IS GOING ON I GET IT!" Can we stop this now?

Last night Ashley's one and only accessible central line slipped. As we opened her dressing to clean around the wound I looked in the whole and saw the cuff that is supposed to be anchoring the catheter into her vein. My heart dropped. Instantly I could barely breathe. The line is still in the vein and functional, but it is NOT secure. I can't tell you how much I ache over this. "REALLY GOD? REALLY?" I don't get this. Its my only chance to keep her with us for any period of time. My only chance. Without this venous access no one can care for her and support her body. Without nutrition, albeit synthetic and basically death to her liver, her life can't go on. She will not survive. I have no idea what will happen today. With this infection I don't think they can take her in to even repair or attempt to reposition it. I can't do this. Does anyone realize this? I am not strong enough to do this anymore.

Ashley's weight is up even more this morning. The swelling of her abdomen is massive. She weighs 20.25 KILOS. 44.55 POUNDS! She can't even where a diaper or clothing! She is that big and is growing every hour. I'm told nothing can be done. NOTHING! I can't even lift her to adjust her on the bed by myself. If I can't adjust her positions for her how is she supposed to? She can't move she is so HUGE. And yet her veins are dry. Her kidneys are stuggling. She's not even third spacing that much. This is all her bowel. The loops of the bowel are filling with fluid and swelling the walls larger and larger and larger.

The pressure of the swelling abdomen has caused her to need oxygen support again. She can't breathe deep enough with all the weight pressing against her diaphram. She is stuck flat on her back. Unable to turn to either side because of the wounds on the left and the swollen stoma on her right. She is miserable. Unrecognizable. She is screaming non stop. Her voice is hoarse from all of the crying. We have to restrain her arms to keep her from ripping off her oxygen. She is so unhappy and it is destroying me. My sweet, happy, joyful baby is confused, and hurting, and angry, and so, so sad.

Allie is right. Every day I wake with hope only to have it dashed, destroyed, and defeated. This is not make believe. This is a real live nightmare. I can't wake up and make it go away.

Some relief has to come. If it means they take her to surgery today and remove this poisonous organ from her body then lets do it. My daughter needs help. She may be unable to attend her own party, she may be left on a vent, she may be septic from the poison spilling out into her abdominal cavity, she may die. We have to try. We have to help her. We have to.

I NEED a plan to give my daughter back some form of quality. This morning I will demand decisions be made on her behalf. Not another day of doing nothing. NO MORE. WE ARE FINISHED WITH THIS TORTURE. FINISHED!

Words

I can't seem to find any. My thoughts are a jumbled mess, my mind swirling, and my heart aching. The words are caught up in that mess and I'm struggling to find them.

Tonight I had dear, sweet friends surrounding me for a few hours. Ministering to me and to my baby. On a night that could have easily turned into torture for me I was able to smile a few times, laugh a little, and share my sweet Ashley. God was good and brought great comfort to me through the friendships I share with the women who stood in our room. I'm grateful for that.

I hate the place that we find ourselves in. Its so frightening. So unsure. I can't explain how I feel about today's news. I guess this morning we might have a little more direction. I'm so tired. So very tired. It has been more than 2 days since I have slept. At all. Not even a nap. Ash cries most of the day and night. She needs help to move in even the slightest of ways. Her abdomen is so large, so distended that she looks completely unrecognizable. It it frightening to see her this way. She looks as though her skin is going to tear open.


If my mind were clearer and if I had gotten a little bit of sleep I might have been able to write the words that I truly wanted to share tonight, but I just can't do it. Let me just say thank you for being here. Thank you for your encouragement. Thank you for your prayers. Life as we knew it has been completely taken from us and we are now trying to figure out our new one. Its proving to be more difficult each day.

7/29/2010

Imagine If...


...you could stop the pain and suffering

...you could give her the opportunity smile again

...you could hear her giggle a few more times

...you could get lost in her eyes as they sparkled with joy

...you could take her back home and allow her to just be 5 for a little while longer.

...you could see her snuggle on the couch with Blake as the Rangers played.

...you could watch Allie carry her from room to room on her hip.

...you could see her dance with her daddy before bedtime.

...you could watch her peek around the corner to see what was going on in the other room.

...you could surround her again as we all lifted her up in prayer each night.. Her mommy, her daddy, her big brother, her beautiful sister, and her. Just the 5 of us.

Just imagine. Its what we are imagining today.

Ashley's biopsy results came back. The news is nothing to write about. I knew it the moment the scope began. It weighed on my heart all day yesterday, all through the night. It was part of the reason I didn't want to participate in today. The thymo treatments that ravaged her tiny body did not work. There is nothing more than can be done to save this organ. We could wait a thousand more days and the attitude coming from our team is that it would be to no avail. Our time with this organ is almost up. The only thing the surgeon could offer me this morning was the idea of ex-planting the bowel in an effort to give her back some quality of life. Yesterday he was opposed. Last week the previous surgeon was too. This afternoon they will all meet and discuss the idea. Removal of the diseased organ should give our daughter back to us. It should end her suffering. She just has to survive the operation and then we can go home. At that time she will be fully dependant on this one central line to keep her alive. We will grasp onto each moment that God gives us with her in our home. We will do our very best to make as many memories as we possibly can with her. If she comes home some how we are taking our family some where and we are going to get away from this insanity if for only a few days. In the meantime this transplant team will try and decide if they will allow us to try again. If they will re list her on the organ waiting list. We are in the process of fighting for the right to infuse Omegavin along with her TPN instead of the normal lipid mixture that kills our TPN dependant children. Its going to be a battle, but we are requesting it be granted under a compassionate use grant from the FDA.

The road from this point on is not easy. As if any of this has been easy. I don't know the number of days my sweet Ashley will live, but I do know that we will love her, cherish her, and celebrate her and never look back. NO REGRETS. She deserved life. We have done and are still doing everything in our power to give it to her.

Lots of disappointment. Lots of tears. Lots of hurt. Pray for my husband. Pray for the team as they attempt to develop the best plan for the remainder of our sweet Ashley's days. By the grace of God He may grant us months, another transplant, and a few more years. Is there anything to big for our God? I think not.

Its 4am...

...my sweet Ash has not had one moment of relief tonight. Not even a brief period of rest. The last 4 or 5 nights she was getting about and hour to an hour and a half when the times would fall just right and she could receive dilloted, lortab, and benadryl all at the same time. Although it was brief we would all breathe a sigh of relief as we listened to her quietly rest. Tonight there has been no combination of medications to ease her discomfort. Nothing is giving her any help. They just gave a dose of ativan to try and take the edge off enough so she could sleep. Nothing happened. She is so, so exhausted. I am so, so exhausted.

The look in Ashley's eyes is fearful. She hurts so much and doesn't even know why. The looks that come across her face, not even a moments peace, are so very hard to see.

I sat next to her bed at 2am, then 3 am, now 4am, and just whispered, "do You see her? Are you hear? Can You help her?" What else is there to say? I just don't even know how to pray anymore. So I told the Father that I don't know what to say to Him. I really and truly don't.

Ash is not even close to the end at this time. Many of you are telling us to let her go. It doesn't work that way. There is no plug to pull. No machine to turn off. My daughter is strong, vitals are amazing, breathing like a champion through all of this pain. I'm not sure that I can help anyone understand where we sit. We are facing miserable, heartbreaking decisions over the next few months. Ashley's life will not be long without a miracle, but she is very much alive. When they tell me she may die they aren't saying that its going to be today. No, first she is going to hurt like very few have ever experienced. There is nothing any of us can do. Nothing! I'm not keeping her alive to suffer. I'm not doing any of this. I have no control over when her last breath comes. Neither do her physicians. Again, there are 3 options. Healing and bowel recovery which will give her the best possible outcome and perhaps eventually restore her quality of life. Re-transplant. Which will be the hardest mountain she has ever had to climb and still she may not make it. Denial of re-transplant which we would then take her home with this diseased bowel that is causing all of the pain and keep her going on TPN until the site is gone and she passes from inability to give her nutrition or until she succumbs to a horrible infection that spreads systemically throughout her blood stream (sepsis). The last two options will bring her great, physical pain. Currently she has no quality of life. This initial process of rejection is the most miserable pain I have ever witnessed. Dave and I didn't choose this. We don't get to choose. This is what it is. Like they keep reminding me "this is severe rejection. She's going to suffer."

Our only option in this horrible situation is to keep loving our baby. We are stuck in a no win situation at this time. She has to heal or go home to wait, survive the next 6 months before an evaluation will be done, or suffer until death takes her from us. I'm not sure that anyone really understands where we are. Perhaps I'm not able to make it easy enough to understand. Maybe I shouldn't be sharing her story. At least not this part of it? I just don't know how to not write it all out. I've been doing it for so long.

Please don't write to us and tell us to let her go. Please don't tell us we are making her suffer. Do you really think we would choose to torture one of our children? I don't get to decide. I'm just her mommy. I can't stop this. All I can do is pray when the words come. When they don't I just sit and stare with the most empty feeling you can imagine. Please don't try and comfort me by saying she needs to earn her angel wings. Children don't die and become angels. They just don't. It may make people feel better to think of death in this way, but I know that they do not. Its not Biblical. I hope I'm not offending anyone by sharing that. I just know it has to be said. Ashley will not become an angel upon her death. She will go to be with the Lord, but she will not be made into an angel. With all due respect to you if you do believe this way I have to share that I don't believe that. Please forgive me if I offend you.

Ash and I aren't getting dressed for rounds today. I don't even care. I'm so tired I can't imagine hauling my stuff down the hall, out of the unit, and into the shower. I just don't care. I hope this doesn't become a habit. I've only ever done it one other time in 5 years and that was two weeks ago. I just don't have what it takes to put my "game face" on right now. They can all stand outside and discuss what they think they need to. I'm staying in my room, next to Ash and hopefully at some point mercy will be granted and she will fall to sleep.

7/28/2010

I thought...

...for a long time about what images I would share with all of you today. Its a struggle for me to hold back, to not show the world the strength my little one has. If you could only look upon the images I have forced myself to capture you might be able to imagine the level of discomfort she is enduring.

I could have shown you the massive hematoma she arrived here with 3 weeks ago. The bruising and bleeding that kept her so uncomfortable she couldn't even straighten her leg for two more weeks. The bruising that was so deep we weren't even aware of the tunneled puncture wound that sat opened in the middle of it all.

I could have shared with you images of that puncture wound. The one that we are forced to pack using strips of gauze and the wooden ends of sterile q-tips. The very wound that brings me all the way to my knees as my daughter screams each time it is pulled out and re-packed.

I thought about showing you the stitched wound beneath that puncture that opened up on its own because her cellular structure was destroyed with her treatments.

I snapped pictures of and then wouldn't allow myself to post the images of the wound surrounding her broviac catheter. It is honestly a sight I have never seen before in my life. As far as central lines go this exit site is a disaster. It has an open, bleeding, oozing wound the size of a nickle with the catheter exiting out the very center. This is supposed to be kept sterile at all times to keep infection out of the catheter and to protect from sepsis. Its impossible to do with the way this wound was left from her last trip to the OR. It is a nightmare. The cleaning of this site requires me to stick alcohol swabs into the raw wound and clean it out the best I can. You can only imagine the looks of pain on my sweet girls face.

I chose not to show you the open wound, that is now beginning to heal, directly above the catheter that was not stitched closed when removing the previous central line. Why no one thought it important enough to not leave a hole in my baby's side is beyond me. Out of all the wounds, 4 in total, all on the same side of her body, in perfect alignment, this one is healing the best.

Images of her swollen distended belly are frightening to look upon. I'm told her bowel is so injured that it is swollen inside of her causing the distention of her abdomen. This is what is causing the majority of her pain. This broken, struggling, foreign, organ inside of her tummy.

I deicided not to share the pictures of her fingers and toes. Images that show the raw tips of all her fingers and toes left from all of her outward layers of skin sluffing off. No one knows why this happens during rounds of rejection, but for some reason the skin slips right off. Its making her crazy. She is constantly picking, pulling and rubbing the hanging skin off.

I'm not painting a very pretty picture in this post and I realize that. I also realize that this will serve as an honest account of what the transplanted life can look like. Scroll over to the left side of the screen a pick a few posts from January, or March or even May and see the other side of her transplanted life. What I wouldn't give to be back in those days.

Ashley Kate's fentanyl patch was increased to 37 mics per kilo this afternoon. This is in addition to her scheduled dilloted every 2 hours and her lortab every 4. All amounts have increased or times between doses have been decreased in an attempt to make her as comfortable as possible.

This is what Ash is enduring daily. Each and every one of these images are real. Very real. Her cries are what I listen to all day long, every single day. The looks on her face are what torment her daddy and I when we try and close our eyes. This is what Allison had to see for herself, but then had to leave because she couldn't continue watching. This is what my son isn't ready for. His tender heart toward our littlest daughter isn't ready to witness firsthand the pain she is in and the helplessness we all feel as we stand by and do nothing.

I thought I would share how Ash was doing tonight. There are no pretty images. No funny stories. Not much of anything that I can even be encouraging about. It just is what it is and it its entirely unfair. We need a miracle. Desperately.

Images



Just wanted to share a few images from the last two days with you. Yesterday Ash received yet another blood transfusion. I've lost count how many she's required the last 3 weeks. All I know is that I am so very thankful for all the O+ donors out there. Your saving her life.




Allie saying goodbye to Ash this afternoon before they headed out on the road. Get ready Oklahoma she's coming to town for the next couple of weeks.




This has to be one of my favorite images of all time. My sweet girls. They are both so beautiful.



Ash sitting up today after having her hair washed. Its getting so thin from lying on it for so many hours a day. I wash it every 3 days(would love to do it everyday, but its impossible to put her through the process that often at this time). We got it dried and braided in an attempt to keep it from matting so much and hoping to save it from falling out with each brushing. As you can tell it hurts to be her today. Ashley Kate is normally a very petite 15 kilos. Today she weighed in at 19.2 kilos. That is 42.24 lbs! Quite a jump for her 33lb body. At this weight it is impossible for her to move on her own. She can't turn over in the bed. Which is why her hair is matting and falling out. She can't sit up on her own and barely with assistance. She can't stand. Can't take steps. I don't know how they are going to get it pulled off of her, but this extra weight combined with a very distended tummy is making her even more miserable.

I think I miss her smile more than anything. Her laugh runs a close second. The sparkle in her eyes definitely. I just miss playing with my girl. At this time our entire interaction is giving comfort, and tending to her medical needs. Oh, how I miss our Ashley!

The address I listed seems to be working sometimes and not working others. I'm not sure what to say about that. Teresa, I have received a package and beautiful cards from you on several occasions so I don't know why some are being returned and others are not. Just know that I appreciate your thoughtfulness and your prayers so very much. I don't have another address that can be used. Perhaps trying to begin with Nebraska Medical Center instead of Ashley Adams might help? I really don't know. I'm getting mail both ways.

Ash and I are spending a quiet evening here in the PICU. Just trying to figure out this new "old" life of ours again. Take care. Trish

Address

Ashley Adams
982145 Nebraska Medical Center
Omaha, NE 68198-2145
c/o PICU

Spinning

My head is pounding, my world is spinning, I'm being told my youngest daughter is probably going to die. Stop. Let that sink in. Our baby, the joy, the life, the heart of our home. Our sweet Ashley. 10th birthday? not likely, 8th? don't count on it, 6th? it would take a miracle. A series of miracles one after another after another. Still I hear a voice inside of me saying, "only God knows. He created her. He loves her. He is in control of her days." Its almost a defiant piece of my own soul welling up inside of me. I want to look them all in the eyes and say, "YOU DON'T KNOW! YOU DON'T KNOW HOW HER STORY ENDS!"

Is Ashley Kate dying today? NO. She's not. Her vitals are strong. She breathes on her own. She is living. Is Ashley Kate dying tomorrow? NO. Next week or next month? Dave and I just have to take this part of the journey a day at a time. At anytime she could contract a bug, a virus, an unknown that could steal her out of our grasp. Thats the reality of where we are. Decisions loom heavy and swirl above us. The only thing we are adamant about is getting Ashley home. This morning after her biopsy the GI doctor looked at me and said, "If you want her at home then I think you should get her there." Not encouraging news. Its where we want her, but it also means we have done everything that can be done, there is no treatment, there are no fixes. We are at the end of intervening for now. This is a waiting game. Two weeks out and no improvement can be seen on the screen by the eyes of the experts. Remember that pathology has the final say, but its not looking promising. So...if we wait we can do it here or in her home. The obvious answer is our home. Its not even hard to come up with that one.

The hard parts are organizing it all. Finding who will help us get the supplies, the medications, the infusions, the everything we will require to keep her safe and supported during this whole process. In the words of our transplant GI doc "transplant SUCKS! Its as devastating as being diagnosed with end stage cancers. You never want to hear the words "your going to need a transplant. It just SUCKS."

Options? Do we really have any? Yes and No. So much is up in the air. The main the that we have to do is support Ashley's systems during this whole rejection process. Will the rejection ever stop or is it going to kill her? We had hoped it would have slowed down or stopped by now, but it doesn't look as though it has. Explant? It would make Ashley's quality of life better, stop the pain, keep her from requiring pain control 24 hours a day. Are they willing to consider it? Not at this time. She's too stable. In an extreme amount of pain, but too stable. No explant for her in the near future unless things begin to get even worse for her. Sepsis, constant infections, fluid losses so high that keeping up becomes impossible, debilitating pain(I kind of thought that is what we were seeing, but apparently it gets worse. Something I can't even wrap my mind around). Re-transplant? Maybe. Its a long evaluation process and before it would even begin she has to survive and be stable and infection free for the next 6 months. Its my hope, but probably not reality. If she is accepted and listed again for transplant then we would wait and pray for organs to become available. Then if transplanted she has to survive it. With little to almost no access. One infection post transplant in her central line and it may all be over.

So do we keep her isolated and away from our friends and family or do we allow those who love her to love on her during this time. As hard as it may be to open our home up knowing the consequences, her daddy and I want her to know and feel she is loved. Loved and valued more than anything on this entire earth. She needs to hear the words of affirmation and feel the love we all have for her. We will do our very best to be responsible with her life, but to also allow her to live it.

Spinning. My whole world is spinning out of control. What our normal had become is taking on a whole new dimension and without the miraculous work of our Almighty God Ashley Kate's life will never return to the beautiful place it was just 2 short months ago.

I just can't accept that her best times are behind her. I can't. So we will continue striving to give the very best life possible to our tiny pickle.

7/27/2010

Your Invited


Ashley Kate's birthday invitation arrived today. They were chosen and designed by Allison. She did a great job! I love them. This picture doesn't quite capture the brilliance of the colors, but I couldn't get the photo right. Anyway, just wanted to share with you all and again let you know your invited to join us.

A few of our friends here in Omaha whom we would love to send invites to we need addresses for. If Emily Wentz, LouAnn Meyers, Sandra, and Joey and Daisy would please e mail me your address or call:) then I would drop it in the mail tomorrow. Oh, Dave and I switched phones back so you can call me on my number which has changed since our last visit here in Omaha. You might just have to send me a message with it. If your name wasn't listed that means I have your address or that I know your planning on being here anyway. So please make plans to join us as we celebrate the 5 years God has blessed us with our Ashley Kate.

Her party is coming together in theory and on paper. I'm just hoping I can pull it all together in reality. The items are arriving daily in the mail and our room is starting to fill up. The theme we chose was "Under the Sea" and the room will be filled with all types of fish and ocean creatures(we have 50 large mylars that arrived yesterday:), flamingos, and bubbles, bubbles, bubbles. The colors are raspberry pink, turquoise, and lavender. If my plan falls into place the room will have 15 large "jellyfish" hanging from the ceiling (made from paper lanterns and streamer), the balloon creatures will be anchored at different heights going from the ground up. It should have a mingling effect between the two. A large bubble machine will float bubbles around the room. Music will be playing from favorites such as the little mermaid and finding nemo. The tables will be layered featuring the colors scheme and a sheer fabric cloth. The center pieces are amazing!!! Tall glass cylinders alternated with large round fish bowls with live fish swimming round and round. Sprinkled with sand and shells around their bases. I know Ash will recognize all that she is surrounded by and my hope is that the atmosphere will bring her a little bit of joy in her current circumstance. My sister is making an amazing cake and flamingo sugar cookies and bringing them all the way in from Oklahoma. We are having a dessert bar catered by a local favorite bakery.

I'm doing my best to create a little joy in the midst of a heartbreaking situation for my family. No regrets. I could allow her birthday to pass with little celebration because of where we sit or I can give us all something to look forward to and a memory to cherish. Call it right or wrong, for us its right.

Ashley's actual birthday is on Wednesday August 4. I plan on a very small birthday party here in her room with just us. Maybe a cupcake and a candle so that we can have some pictures on the actual day. I will decorate a little and call it good.

More than anything I'm looking forward to hugging my siblings, my parents, my husband, my children and close friends that evening and holding them close to my heart. It will be a very special day.

The Heart


You can sum up the description of the heart of our family in one beautiful word: Ashley

There are no words to describe the pain that each one of us are going through at this time. Not the physical pain our sweet Ash is enduring, not the emotional pain each of us are going through as individuals, and not the pain our family as the whole unit is bearing.

Late Sunday evening Dave and I sat across from each other in the quietness of Ashley Kate's hospital room and shared a piece of his struggling heart with me. He shared how he finds himself dreaming, having nightmares, then waking up with that sense of relief, that we've all experienced after a rough nights sleep, knowing it was just a dream. Except that as his eyes focus and he looks around he realizes I'm not there and for me not to be next to him it must be real. He is living the nightmare. If I'm gone then she's gone. Its real. Not just a dream, but our reality. Oh, how my heart broke for my husband. Tears fell from my eyes in the darkness that night. My heart aches over his heartache.

He was supposed to talk with Blake last night. Our son, the 14 year old who adores our almost 5 year old, has no idea the depth of the situation we are in with her. He's been traveling and out of town during this whole time and all he knows is that she is in rejection and back in Omaha. No one has been able to tell him how very close to losing her we actually are. He has no idea that the possibility of re-transplant is looming and even more painful than that the possibility of being denied that re-transplant is there. Blake and Ashley Kate have an amazing relationship. She cuddles up with him in his special spot and watches hours and hours of baseball. They get each other. If he's happy, she's happy and vice versa. His heart is already hurting, its going to absolutely be broken once he realizes the frail place we are in with saving her life. Dave couldn't do it. He could not bring himself to say out loud the things we all know. He couldn't share with out son the words and the information he needs to have so that he may begin processing it all as well. When I asked Dave why he couldn't talk about it all he answered, "Trish I can not do this. I can't." It is just too much for him.

I spent the night with Allie in the hotel room last night. It was my first night away from Ashley Kate. Dave's mom sat with Ash through the night. As we drifted off to sleep Allison began to open her heart. Its in those quiet moments, in the dark that I have always found the windows to my children's hearts opened the most. I sit and listen, saying little as they allow their burdens to unfold. She shared that she didn't want to leave me because she didn't want to make me sad, but that she can't keep waking up every morning hoping that Ashley is getting better and then walking into her room and seeing that she is not. She cried and cried with the realization that even she could not make Ash smile again. It was her purpose for traveling out here. To make Ash happy. To help her play and smile once again. She thinks she failed. She thinks Ashley is going to die. She is hurting and every day she hurts a little bit more. We drifted off to the sounds of Allie's cries. I'm usually listening to Ash's cries as I drift in and out of sleep. Last night I realized that my Allison is hurting just as much as my Ashley. In different ways, but equally painful.

As a wife and a mother I am being destroyed through this process. It is my job to take care of the people that God blessed me with. I wake up every day of my life with the sole purpose of serving these amazing people. I am rendered helpless. Nothing I do can take the hurting out of the heart of my family. Each one of us is aching in ways we have never before. In the beginning of Ashley's life we lived with hope. Through her transplant we always had hope. As she went home to live her life and grow up we lived with hope everyday that her struggles were behind her. Today we are all grasping, seeking, searching, for any signs of hope that our sweet Ashley will make it home to us once again. Even when she does the life she had will be drastically changed. This knowledge robs of us any hope. Without hope life is broken.

Then only hope we have is that God reach down into our family, into our hearts, into the broken body of our almost 5 year old and give us that miracle. When all hope fails, the hope we seek in in Christ and His healing power for each of us. We still need a miracle. The biggest we have ever seen.

Your prayers for my son as he learns the gravity of what his baby sister faces are more than appreciated. Your prayers for my husband as he seeks the strength to actually say the words that have to be said would be appreciated. Your prayers for my Allison as she prepares to leave her mom and her baby sister without a trace of guilt for she has nothing to feel guilt over would be appreciated. Your prayers for our baby, the heart of our family, for her life, her health, her survival would be greatly appreciated.

Thank you for praying. Thank you for sticking it out with us. Its rough, it may get rougher still, if you can fathom that. You will never know how your simple words "I'm praying for you" shared with me in brief message have become so much more than just simple words and phrases. It is the very breath that I am breathing through this time. When I am out of prayers, the words fail to come, the exhaustion takes over, I know that she is being lifted to our Father in Heaven and that He won't forget how desperately we all seek His presence, His miracles, and His love.

7/26/2010

Two Words

Or signs if you want to get technical about it.

Music

Drink

She just opened her eyes and asked for both. Rejoicing that even in her despair I can comfort in even the smallest of ways.

The day has proven to be a rough one, but I promised to concentrate on all things not unhappy or difficult and I'm doing my best to hold myself to it. Just wanted to share.

Two words. Two beautiful words.

Concentrating

... be careful for nothing (what does that mean?), but in everything by prayer and supplication with thanksgiving let your requests be made known unto God.

and the peace of God, that passeth ALL understanding, shall keep your hearts and minds through Christ Jesus.

finally, brethren whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of GOOD REPORT, it there be any virtue, if there be any praise, thing on these things. Phil. 4:6-8

This morning I am concentrating on these versus. I really like the part that tells me to make my request known unto God. I also am partial to the part about peace that passeth all understanding. I could use a dose of that in my life this morning. I haven't really been feeling that peace lately with my lack of understanding what is happening to Ashley Kate or why. So today I don't want to discuss all that is bad in her body. All that is going wrong this morning. All that scares me and pains her. I want to be happy. About something. Anything. So...

I have plugged in a yummy, fresh refill of our Hawaiian Breezes scent. It can be smelt down the hallway in the PICU =). I have a lovely classical cd playing for Ash with her ocean scenes DVD going in case she opens her eyes today. I will be securing the caterer and ordering the last of the details for Ashley's party. Her invitations should arrive this afternoon and I will address them and get them sent out. I will be viewing the banquet room and sketching the plans for the layout this afternoon and I will concentrate on making the best out of heartbreaking situation for my family and my daughter. My heart is so blessed knowing that my siblings and their families will all be traveling here for Ash's birthday celebration. I can't tell you how much it means to me that people are planning to attend. I have no idea if I'll ever get to have another party for my baby and to see those who are making it their priority that weekend has blessed the hearts of this mommy and daddy.

I'm holding back any tears today. I'm concentrating on the verses above and I'm hopeful that a miracle will begin taking place inside our Ashley's body this very moment. I'll check in with you all later. I'm putting the finishing touches on the guest list. We have several precious friends here in Omaha and the surrounding areas that I don't have addresses for so please just know that if you would like to attend on Saturday, Aug. 7th at 6p.m. that you are MORE than welcome. We would love to see you here. LOVE to see you.

7/25/2010

So Hard

Everything about this time in our lives is hard. Nothing is easy. I don't know that we have ever felt like we were under attack such as now. My heart is breaking on so many levels. Happiness is hard to find. I feel as though I'm surrounded by the bad, and all the good, the happiness, the contentment, the peace has eluded me. Slipped right through my fingers. I hate these feelings. Hate the place my sweet Ashley is in. Hate what this is doing to her, to us, to our kids, to our family.

We are trying everything to keep Ashley comfortable today. A fentanyl patch was added to the mix of narcotics being used in an attempt to better control the pain. I have never seen Ash hurt so much. Not in all of her short life. She is in a constant state of pain. Constant. She finds brief moments of relief and I'm not convinced that she is only resting in those moments from anything other than complete exhaustion.

Watching Ash struggle is so hard. So very hard. I need this pain to end. I need to see healing inside of her broken body. For her. I need this for her. It has nothing to do with me. We have been told this could last for weeks until her bowel recovers, for months if it does not until her tiny body can take no more and they agree to remove the dead organ, or for the remainder of her life. Which we are being told will be short. Whether or not this bowel recovers her lifetime has been shortened by her lack of venous access. Swallow that and find happiness. All it does is hurt. So deeply I'm beginning to run out of words. I can't even describe what it feels like to be assured that your child will in fact die while she is just a child. No growing up, no wedding, no grandchildren. Its all been stolen from her by scarred down, over used, veins. This is so hard.

I find it so hard to see our Ashley's life change this drastically this quickly. I find it hard not being there to pick up my son from his mission trip and not being able to be blessed by the recounting of the adventure. I find it hard knowing that I face missing out on the beginning of the last 4 years of his life in our home. I find it hard realizing that my Allison is leaving me this week. What a sweet, refreshing blessing she has been during this time. She has no interest in returning to our home without Ashley or me. She will be finding her place at one of my sisters homes for the next couple of weeks until she too must begin her school year without a mom. Junior High, in a new school no less. I find it hard to watch the clock and realize the hour of Dave's flight is approaching. One more evening to sit close to him, to talk to him, to hold his hand. Its not enough time. It is so hard to watch him leave. I find it hard to know that Ash and I will be alone again. In a state so far away from our home.

Our goal is to take Ashley home. We know that our time with her is ticking by whether it be weeks, months or years. We are aware that every moment with Ash is a moment to be treasured. To make memories. To love on her. The team has been very supportive of this idea. They too know that home is where we desire for her to be. Even in her current state. The plan is to get her infection under control or cleared. Secure line placement for her TPN and IV replacement. Figure out a pain management system that works the best for her. Then go home to live as a family. I'm sure we will bring in some type of nursing care to assist with daily blood draws and assessments. Outside of that we will treasure our moments together. Just the 5 of us. The sitting and waiting to see if healing will occur can be done here or there. Today's surgeon brought up the idea of taking her home to us this morning. We did not dream this up on our own. We simply let them all know that we were losing precious time as a family. Time that can never be gotten back. Once it is decided if she is healing or not then the tougher decisions will come our way. We all assume that we are about 6-7 weeks away from this. We will then have to return to be evaluated for transplant. The team will discuss and "vote" and then we will either list her for transplant and return home hoping to get the call or we will take her home and love her until her body gives up. Again, this is so very hard. I can't imagine the worst people in the world enduring such times, but my family is. There is no understanding. None.

Dave and I know that God still loves us and that He is working on something. Will we ever come to understand this side of heaven? I think probably not. Will our faith be the same once we come out on the other side of all of this? I think probably not. My hope is that it will be strengthened. That we will be able to say, "that God is good. He is still good". As I brush my Ashley's beautiful hair I am reminded that He knows the very number of those that are falling and those that remain. My questions of "is He here, does He see" are answered in that moment. I know He's here, and that He is watching. I just wonder how He's going to work all of this for our good. I'm being honest with you all when I say that Dave and I are struggling to understand.

This is hard. So very hard.

....watching this is not hard. I hope you enjoy it as much as we do.
video

Round the Clock

Its a not stop, round the clock, every two hours infusion of pain medication and yet its not touching the struggle in our little ones body. Its so very sad. For the second night in a row Ash has yet to find sleep. She is awake, crying, moaning, clawing. My heart aches for my baby. I want this to stop. Its so very unfair.

I guess if we were looking for signs of healing we would see a decrease in the amount of her stool output(we haven't its getting higher) and we would see her begin to get more and more comfortable as opposed to hurting 24 hours a day. If I look at these two things then my heart sinks. I'm trying not to concentrate on whats happening today, but think about weeks from now. Its just that I know without improvement in these two areas we are looking at a very long, very rough, very unsure path ahead of our baby.

I hurt so much these days. I hurt over what Ashley is living through. Without a huge amount of narcotic in her system Ash can't function. The pain of rejection is so severe. She has never experienced it to this degree in the past. That lets us know what degree this bout of rejection is. I've never seen anything like this happening to Ashley. It is so constant with no relief.

She is an amazing girl. Her threshold for pain is very, very high. Which tells how very much she is hurting this round. I am helpless. I can't take this from her, but would in an instant if I had the power too. Its in these hours that I wonder where God is and if He is watching my daughter hurt. I know all the right things to say, I know He is supposed to be here. I do. I just wonder why this is necessary and since He is in control why He won't intervene on her behalf. Ash didn't do anything to cause this pain in her own life. She is innocent. My heart breaks over that fact. If I ever feel angry over her birth history its in times like these.

We are trying everything we can to make Ashley comfortable during this time. Knowing what lies ahead of her if things don't turn around pierces my heart. The journey back is going to be the longest of her life.

The other day someone walked into this room here in the PICU and said, "Oh, I see someone is a little spoiled. " It took me back for a second or two and then she was gone before I could ever respond. Our sweet Ashley is not spoiled my dear friend, she is LOVED. She is taken care of. She is provided for. She is made comfortable. Our daughter has never asked us for anything. She's never asked the world for anything. She was born, she came into our lives, she changed us, she continues to challenge us in our walk with our Heavenly Father, and she survives. Nothing about Ash is spoiled. Nothing. I wouldn't wish her path in this life on another soul.

Your prayers for Ashley are all that keeps us going in the hours like these. I know that even when words fail to come to my lips that someone, somewhere has my baby covered and is crying out to God on her behalf. The value in that knowledge is greater than anything I possess. Each of you are so very precious to this family. Sincerely, I thank you. Our baby needs your prayers. From the youngest to the oldest, from the closest to the farthest, from the most spiritual to the ones who are just beginning to walk by faith. Ashley Kate is alive today because of the prayers of His people. I believe this with all of my heart.

7/24/2010

We want it back

Its been over a month since Ash has been home. Its been over two months since she walked, played, swam, or rode her bike. Its so very hard to watch her now as she struggles daily to even open her eyes when we have seen her live. Truly live. Dave and I want it back. For her. We want her life back. What she is experiencing now is so foreign to her. Its not even real, it can't be. I wonder what she's thinking? I wonder how confused she is about her circumstances. I wonder a lot of things concerning my sweet Ashley.

Her life is worth fighting for. We've talked about re-transplant. The dangers, the obstacles, the everything. Currently with the information we know I believe that we all would choose to try again. I don't even know how you decide not to try. How do you say, "lets just watch her suffer and die". Transplant is hard. Surviving it is even harder. Re-transplant? One of the hardest things to even consider knowing what we've seen happen to our daughter, but her life has value. She deserves to live. If she can be given that chance then who are we to take it from her?

So many things are going on in Ashley's body. Many of you were concerned about the appearance of her right arm. We are too. Unfortunately there is nothing we can do but wait and see if it will heal. The swelling and the injury is a result of that pic line that was placed last weekend and never worked. She doesn't use the hand for anything. She keeps it protected by covering it up or shielding it with her other hand when people come near it. Her little fingers and toes are sluffing. Kind of like a snake who sheds its skin. Ashley's body as a result of the rejection and the massive swelling that has gone on is sluffing off her skin. Its happened in our past experiences with rejection so I haven't been too concerned about it yet. The new skin will ooze until it heals. Its a messy, uncomfortable experience but not one that will last. Her infection has remained in the largest wound so far and on the skin. We have no evidence at thsi point that it is growing inside the catheter or in her blood stream. The moment that we do see symptoms they will pull this line out leaving us with few options, but its a better option than losing her life from these gram negative rods. She is suppressed to the point that a simple line infection could result in her death. If the line is lost then they will place one in her liver. Risks? Huge. High. So much to consider if we have to do such a thing, but all the while knowing if we don't allow it she will perish.

I want to share with you all a clip of Ashley Kate and her walker. Too say that our strength for this battle renews each time we see clips of who Ash really is and how she really lives life is such an understatement. We love this child. We will stop at nothing as we seek to give her back her quality of life. So tonight we are still praying for a full recovery of this damaged bowel. Enjoy our gherkin and the fruit of her hard, hard work over the past year. Good night.


Dad's Here



The first image of my morning. Nothing blesses my heart more than to see my husband love on our children. Dave needed to be close to Ash. He needed to see her. He is right where he wants to be. Next to the gherkin.



Yeah! Daddy's are good for building Amtrykes. We have been waiting all week for him to get here so she could get back on her bike. It took minutes what would have taken me months if not years. Now if we could find a crescent wrench in this hospital the bike would be good to go.



Ash sat up, had her hair washed and dried, and watched her daddy build her bike. There were moments that were tough, but she has to adjust to the pain and start getting her strength back if we are gonna win this fight. She was out of bed for an entire HOUR! I'm so proud of her. She never ceases to amaze me.

They are addressing pain management issues. Trying to get her to a comfortable place so that she might find relief. Its a nasty game, with lots of side effects, but one that must be played. Allowing her to suffer is not an option. As badly as I want her awake and coherent and communicating I can't watch her miserable 24hours a day. Lots of things being considered. For now the amounts and length of time between doses is being tweaked. She remains on dilloted and lortab.

Things are better with Dave here. We have found hope. We are concentrating on the 50% chance of regrowth and recovery of her bowel. We haven't seen any signs of graft survival yet, but we aren't giving up. Today is a day for a miracle.

I asked today's surgeon if he were praying for our daughter too and he turned back looked us in the eyes and said "every night". My heart was more than blessed. I think our baby can do this. Its not going to be easy. Its not. Its going to be the hardest thing she's ever done. Much harder than anything I've ever been through. Still she can win her life back. She can. She has too.

We discussed lots of options. Lots of things, scenarios, and outcomes. At this time no one knows how this plays out. I take that back. God has written the end to her story, He just hasn't told us yet. Again, Ashley's best shot at living and growing up will be for this bowel to heal. Outside of that our lives and hers will drastically be changed.

For today we are grateful. Even through the pain, the fear, and all the tears our tiny girl is here. Her eyes are open and she is living life to the best of her ability in her current circumstance. Hug your babies today, hold your children close, take the time to visit with them and get into their worlds. All the grass cutting, garage cleaning, errand running, and paper work CAN WAIT. It just can.

Love you all so very much for loving our daughter, for praying for her, for following her story, and walking this journey along side of us. Thank you. A million times thank you.

What are we going to do?

That was my question to Dave this evening. He looked me in the eyes and said, "We are going to watch her beat the odds. Thats exactly what we are going to do." With that said I nodded my head in agreement and thought to myself that I sure hoped that is what we were going to do.

I guess I've been bombarded with days and days of such devastating news and scenarios that I lost sight of the fact that we were talking about my daughter. You know, the littlest one, who has beaten the odds her entire life. Yep, he's right. We are going to watch her do it again.

Such is life in the land of rainbows and daisies. We don't give in to the negativity threatening to swallow us whole. We concentrate on the positive. Find something good and celebrate it, hold on to it, cling to it if we have to. Its a land where our daughter doesn't die and she doesn't continue to suffer. Its a land where we bring her back to her home and watch her grow. Its the life I want. The life we had, the one that is being ripped out from underneath us.

It is refreshing to have him by my side. He gives me strength when I thought I had none left to give. He often tells me that I'm the one he would want in his corner if he were ever stuck in a hospital. I guess thats a good thing. He watched me go toe to toe over an additional blood draw scheduled for tomorrow. Once is enough. It just is. I pleaded our case for our daughter about desiring quality of life for her and protecting her against yet another discomfort. Eventually it was decided we would switch meds to one that didn't require that extra draw to measure trough levels in her blood. I could see him out of the corner of my eye. At the end of it all a smile crept across his face. I knew he was glad that I stood my ground. I knew he was proud of me. Its just that I'm tired. Really, really tired of having to plead our case for quality of life to the same group of people over and over again. I guess in the back of my mind, never pushed to far out of plain sigh,t is the thought that I refuse to stand before the Lord and tell him I didn't give it my all where our Ashley was concerned. He gave her to me to take care, to protect, to provide for and that is something He did not have to do,but He did in fact choose me. Its not just that I'm here taking care of her, its that I have to answer for every decision made, every consent given and every obstacle placed in front of us to tackle.

The decisions we are facing are just unbearable. I can't even go into all the details and all that my heart feels about them. I'm just praying that healing has taken place and that we would be spared the unthinkable choices. Its my hope. My prayer.

Its been a very long day. So much has happened and I'm exhausted. Ash is receiving her pain meds as I finish this post. They have changed them to every 2 hours in stead of 3 now to attempt at giving her some better coverage. I'm hopeful she will find rest tonight. I know we both need it.

7/23/2010

Were in Trouble

Those are the words from rounds this morning. "We are backed into a corner and are punching our way out. There are no easy answers here. Its going to be rough."

This infection is dangerous. We may not be able to save this line. Currently the infection is growing in the site of the wound. We cultured the inside of the wound and the drainage from it. Its not in the catheter or her blood steam. "How do we keep it out?" I asked.

"I'm not sure that we do. For now she is relatively stable. We cover her with broad spectrum and fight our way through this. Its all dangerous from here on out."


Panic. Surging up inside of me. Panic. We have very little options if we lose this line.

Option number one: The "higher ups" (thats what the surgeon called them) in inteventional radiology feel like they could "bust" through the blockage. "How do we protect the pericardial sac and her heart?" my question to him. His answer, "We don't". There is no guarantee. Its all dangeous. I can't tell you this will work, but it is an option." Panic. Again. Surging up inside of me. I've been there before. I've seen them puncture her pericardial sac. I've watched the crash cart roll into her room and a team of doctors jump on top of my daughter. Literally. Breaking ribs and compressing her chest willing her heart to beat again. I've lived that nightmare. I don't know that we can do it again.

Option number two: Tunneling through from the femoral, busting their way all the way up to her neck and doing a cut down to bring the catheter out her neck. His words not mine. Busting. Tunneling. Cut down. Its getting ugly now.

Option number three: GOD PROTECTS HER FROM THIS INFECTION AND KEEPS IT FROM SPREADING. ITS THE ONLY WAY. PLEASE TELL ME THIS IS THE ONLY WAY ITS GOING TO GO.

Change of Plans

The meeting with the team is not going to happen. Its more than disappointing knowing that Dave has such limited time to spend here. I understand schedule conflicts, I really do, but its important for us to have the opportunity to sit and discuss options, plans, etc. So, no one is available to talk to us today while Dave is in town. The surgeon on rounds did agree to give us a few moments to visit with him one day over the weekend. Still its not going to be a collective group with clear direction that we had hoped for. We are disappointed, its the life of our youngest daughter on the line and our time may be limited with her. We need to figure out how to best spend our days to give her quality time with family. That's all.


Oh, by the way, the infection in Ashley's wounds?...gram negative rods. Yeah, its the ugly ones. Not going to be easy to keep it from entering the catheter and spreading to her blood stream. Its about to get ugly. God has His work cut out for Him on this one. Its more than disappointing to see that it went unaddressed for several days and now this is what we have oozing out of holes in my 4 year olds body. My stomach hurts over this. It really does. The infectious process has begun.

Traveling This Road Together


We jumped into this journey head first, not hesitating, ready to go. Together. Dave and I didn't think twice. We just jumped. Sometimes you know when something is right. You just do. This...we knew was right.

We spent years waiting, praying, hoping God would bless us yet again with a baby. It was our hearts desire. My heart needed it. I just did. His heart was willing. It just was. Its who we were.

So when the phone call came and the words were said that our daughter had been born the night before I called Dave at the office and said. "she's here".

"Who's here?"

"She is. Our baby was born last night. She's tiny. Only 28 weeks, but she's ours if we want her."

No hesitation. None. We jumped. We knew it was right. We knew she was going to be ours.

I can't tell you how much God moved in our hearts those first 2 weeks. A series of events outside of our control ,but always under HIS, led to our baby becoming a ward of the state of Texas rather than just ours in that first day. It was heartbreaking to see how some people could stand in the way of what we knew was right. In the end what they meant for harm, God did mean for our good. He did. But oh how difficult it was to lay our heads down each night wondering how our girl was doing. We called the hospital each night. We told them we loved her. We told them to let her nurse know that she had a family. We told them to treat her as though she were the most valuable thing they had ever touched. Because she was. To us she was.

I still remember the responses on the other end of the line. Just a few days shy of 5 years later I remember. You could almost see them rolling their eyes and whispering, "its them again." My skin began to get thick in those days. It had to. People would whisper, they would question, comment. You name it, we have heard it. Still it didn't matter. We laid in bed each night and talked about "the baby". Dave refused to allow us to call her by name in case something took her from us. That lasted about 2 days. Then he spoke it for the first time and I just smiled. She did it. It only took 2 days. She had him. By the heart. 5years later that relationship is the strongest I've ever witnessed. He loves her like nothing you've ever seen and she loves him just as much if not more. What joy it brings to my heart to watch the two of them together.

This afternoon that daddy will walk through the door to her room here in the PICU. I can't count the number of times I've watched him walk through this door with his backpack. I'll never forget the backpack with the broccoli in it! Never mind that, its the smile on his face, the look in his eyes, the way he hugs me tight in those first few moments, and the gentleness with which he touches our baby that I am looking forward to today.

We are in this together. Much of the time we are separated by 700miles as we walk the paths on this journey, but we couldn't be more together if we were sitting side by side day after day. My heart breaks for my sweet Ashley, it breaks even more for her big brother and sister, but it breaks the most for her daddy. NOBODY loves Ash in the same way as her daddy. His heart is hurting. He can't bring himself to talk to me about things over the phone. He reads the journal each day, cries his tears privately in his office, says his prayers, and puts on a face for his patients to get through the day. At night he counts down the number of days it is until he will see her again.

Its going to be a good day. Its going to be a hard day. We are meeting with members of the transplant team this afternoon to discuss all that is happening, all that will be happening, and all that could potentially be happening to our daughter. We will begin to prepare our hearts, talk about direction, and pray like we've never prayed before. Praying for a miracle to take place. It could happen. I just don't think this journey is supposed to end. Her daddy believes in her. I do too. We just need the rest of the world and this transplant team to join us. Keep spreading the word. We owe you all more than we could ever repay for traveling with us. I know its hard. I really do. I thank you from the heart of our family. I thank you on behalf of our tiny gherkin whom if she could understand would want to thank you too. Love you all. Trish

7/22/2010

Lets Talk...

...about the good. Even in the midst of this suffering I was able to be blessed by a few things I saw today.

First of all we started PT with Ash this morning. Its not PT like I've shared with in the past. My sweet girl is on very strong narcotics every 3hours to manage the pain she is in so PT is a little less aggressive than our past experience. We started today in her cube chair. Allie brought it out with her for Ash. She sat in the chair, eyes closed, crying, grimacing, and struggling...but she sat upright for 3-4 minutes. At that time she opened her eyes, found mine, and said, "UP" with her voice not her hands. That my friends, was good.

Next we saw her open her eyes spot a large pink flamingo at the end of her bed and point to it in recognition. That too was good.

Twice today she used a sign. Its been over 4 days since I had seen her have the ability to use her hands for any communication. They are very, very swollen and the skin on her fingers has begun to sluff off making them so sore. We turned down her music this afternoon and she lifted her fingers on her right hand and signed "listen" which means turn it back up. That was so good it made me giggle. I guess I won't be taking liberties with the volume knob on her CD player. It was a good moment in our day.

She hasn't opened her eyes to be awake in days. She is awake, but rather just lays on the bed with eyes squinted tightly closed as she copes with the pain of the rejection. So...I didn't think she was really watching the Wonder Pets DVD that had been playing for umpteen hours and I turned off the TV. She opened one eye, located me and signed "pets". Uh huh, that was good enough for me. It has continued to play ever since.

Ash is there she is. Its just that coping with her pain is stealing her from us for this time, but she's awake behind those eyelids and she's listening to everything going on in this room. She is running the show from her bed and I am all to happy to accommodate her every wish. She is not demanding, she is hurting and these things that surround her remind her of home. I hope I'm listening to the blaring of the Wonder Pets for many, many years to come. It wouldn't be home without them.

She has currently gotten quiet, her meds combined with exhaustion have finally calmed her and I don't here any moaning or grunting. This is good. Perhaps sleep will come for us for the next couple of hours. I hope it does anyway.

Her daddy will arrive tomorrow afternoon. I can't wait. Tonight he shared that he "just needs to see her". Walking through our home and being surrounded by her things has been very difficult for him this week. Tomorrow night her will be cuddled up next to his girl and it will be a beautiful sight. Healing for both of them. It will be good.

So in the midst of this nightmare we are being blessed. In tiny ways, but still blessed. I'm concentrating on the good of today as I close my eyes tonight and I'm being thankful for each of these things.

Wrestling

This post is going to be hard to read for some. Its hard for me to write. You are going to be very tempted to judge my words, my heart , my feelings and set me straight. I know, but its honest. Its where I've been all day long.

I'm in the middle of wrestling with God. Its a place I never imagined myself to be. Its a place I don't want to be, but I find myself here. I don't get this. I really don't. I mean, she's 4 years old! My faith in God is what defines me. It is the core of who I am. I don't not believe in Him because they tell me my daughter may very well die. I don't believe in Him more if she doesn't. I just believe that He is who He says He is and that He can do what He says He can do. Its that simple. Right?

In good times it really is very simple to trust Him. When life is trucking along and Ash is home and living her four year old life I can really trust that He is a loving God. So what am I to do now? My baby is in pain 24 hours a day, finding no relief from her situation, and they tell me "this is what it is. Sorry". Really? Really God? What was the point? What are we doing here? I want to know! I want to know why she was given life so that it can teeter on the edge of death? I want to know why He didn't take her at 5 hours old or 5 weeks or 5 months? Why give her all that HE has and then snatch it from her in this way? I'm angry. I'm mad. I hurt to an extent I didn't even know was possible. I KNOW He can change things. I KNOW He can heal her. I KNOW He has the power to open veins that are closed and give hope to saving her life when there seems to be none. I KNOW HE CAN. What I don't KNOW is if HE will. That's the hardest part about this. Its the part that is rocking my faith to its very core and its time to get real. I mean really be real. I NEED HIM. I NEED a miracle. I NEED my tiny daughter to open her eyes and for them to sparkle once again. BUT I know HE isn't my "genie in a bottle". HE IS THE GOD OF THIS UNIVERSE. HE IS THE CREATOR OF LIFE. HE IS GOD. He doesn't have to perform for me to prove it. He doesn't have to prove anything to me or anybody else. I just wish that HE would choose to do the work He has in store for me, for my family, for our Ashley by HEALING her and showing this world His power in THAT way.

I'm sad. I'm scared. I'm broken. I'm a believer. Its what I am.

Ash has an infection. Her wounds from all the procedures at line attempts are all open, gaping, wounds in her side. All three of them are on the left side. Her cellular structure has been destroyed by her thymo treatments and the skin was not able to close and seal. So the wounds have been actively bleeding because of the lack of platelets and oozing fluids constantly for days. Today they decided to pack those wounds. Wet to dry is what they call it. Taking a q-tip and pushing gauze into the wounds and packing them. To hold her down and listen to her screams just about put me over the edge. Its in times like these that I wonder WHAT IS GOD DOING AND WHY HASN'T HE STOPPED this from happening. We will be packing and changing all three wounds every single day until they heal. When will that be? A very long time from now because we stolen from her the ability to heal. We destroyed it in an attempt to destroy the attacking cells. Thymo wasn't picky. He killed good ones along with the bad ones. It infused into her body and ravaged her cellular structure. Welcome to the world of transplant. Its not that glamorous. I just keep thinking that something as stupid as a wound infection could steal her from us. This is not happening. Please don't let this be happening.

The chaplain came by today. We've been friends for almost 4 years. We talk, I cry, he tells me I don't have to be strong its ok to fall apart. I tell him it won't be pretty if I really do. Whats the worst that can happen if you allow yourself to fall on the floor and get real with God. Your angry. Its ok. He gave you that emotion. Your hurt. Don't you think He hurts for you? Whats the worst that can happen? I won't get back up. There you go. I WON'T have what it takes to get back up of the ground. If I really get to the bottom of all of this the truth is that I won't want to wake up in the mornings. I'll be useless to my daughter. I'd would sit here in my fear and my grief over the losses in her life and forget to breathe. That's what is going to happen. So for now I'll keep going. I'll keep believing. I'll do my best to trust Him with her life. I'll try to be strong. I'll do exactly what He has called me to do. I'll be her mom because if anyone EVER deserved a mom its my sweet Ashley. I owe her that much. For all she's done in my life, in my heart, in our family, in our home I can't not give her my very, very best. I can't fall apart.

So in the darkness, in the middle of the night I'll sob into my pillow as I reach across my chair and find her hand lying on this hospital bed. I'll plead and beg and do whatever I can to the God whom I know loves me and loves her more than I can comprehend. Even though this doesn't feel much like love I still believe that He does. I'll ask Him for a miracle. I'll ask Him boldly. Because she deserves that much of me. She just does.

This will be along process. 6-8 weeks of suffering before we know if healing is going to take place. At the end of that time decisions will have to be made. Decisions I wouldn't ask anyone to make. Decisions that won't be easy to understand. No matter what direction we take there will be those who will never understand. I'm praying God will heal her so that it doesn't come to that. I'm praying that He will provide answers to Dave and I if it does come to that.

I'm wrestling in this room today and I'm doing my best not to get knocked down. That's where I've been today.