Ashley's Story

She will leave fingerprints all over your heart

10/31/2008

Unexpected Blessing

Just when I thought this would be another long, lonely weekend in the hospital guess what I found out tonight? Ash and I are having visitors tomorrow afternoon. We are SO excited! My mom and one of my sisters are coming to visit! I can't believe it! They are jumping in the car around 6 in the morning and making the 9 hour drive from their home to our little hospital room here in Omaha. It couldn't have come at a better time for us. This has been one of the most difficult, most disappointing weeks ever. I so need this!

This news made tonight a little easier on us. We have something to look forward to. Usually Friday nights kick off the "weekend depression"(not really depression but extreme sadness) for me. When were at home in Texas we are always busy getting ready for a weekend full of fun. Tonight was no exception. After spending the day with her dad(they had a great time even though Dave had to step out of the movie to keep from getting sick and call me to ask, "Is this whole thing gonna be singing?" I really think he just used that as an excuse to buy more popcorn!) Allie had plans with her best friend tonight. Blake worked with his youth group at a Fall Festival and had a good time being one of the "older" kids this year. He called to give me all the details and I so enjoyed our conversation. (Do you even know how much I love this kid? He is such an amazing person and I miss seeing him so much.)

The Tarheels have a baseball tournament this weekend and Allie is playing soccer. Dave got a jump on things this week(I think he's finally figuring life out without us) and had their uniforms washed and ready before tonight. I am so proud of him for that. Last Friday I asked Allison if her uniform was ready and the tears began to flow. "No. I haven't even seen it since you left. Mommy, I really NEED someone to come take care of me. The hampers are overflowing to the TOP!" I assured her that her dad was doing a great job but that it was just gonna take him a little time to figure how to do all my jobs too. When I talked to Dave around 10pm he hadn't even thought about them. So off to the hampers he went to try and track them down and then he had to stay up washing them when he really just wanted to be in bed.

Last I heard the guys were snacking on pumpkins seeds, Blake was in "his" spot, under "his" blanket, and Allie was getting all geared up for our Internet shopping trip tomorrow. She is desperate for clothes and I hadn't yet bought her any for the fall. I told her to get ready to shop. Its a little unconventional but I don't know any other way to do it. We are both going to be on the computers, talking over the phone, and trying to choose what she needs. This is better than sending her dad back to the mall with her. I'm afraid he might not know what he is doing in this area. They tried to shop for shoes together this morning and I ended up ordering them online tonight and having them shipped to her next week. Its really crazy the way our life works when Ash and I have be in Omaha.

It should be a quiet night for us. Ash had her 4hour infusion this afternoon and her gancyclovir at 6 this evening. She has no meds scheduled through tonight so once I rock this tired baby to sleep(she hasn't had a nap today because of the long infusions) we should have a good rest. Her tummy doesn't seem to be hurting near as much today and I'm really hoping she is over the worst of that. Seeing her in that much pain has been really very trying. Hopefully I won't have to mess with her until labs at 5:30. Just thinking of having that many hours of sleep in a row has me excited! We have to get all rested up because we've got at least 3 ballgames to listen to over the phone tomorrow. Oh, how I wish we were really going to be there watching instead of just pretending.

I hope your night was blessed. Our's has been really quiet and we were so ready for one of those. Thanks guys for keeping us in your prayers. We love ya'll. Good night. Trish

BOO!


Trying To Scare The "Yuckies" Away!!!

I really and truly do not know

I sit reading the official pathology report from Monday's biopsy. It took the entire week for them to get it to us. The news is not good.

I really and truly do not know if our sweet Ashley Kate will make it out of here with this bowel. It is not healing. Every week a different area of her bowel is affected. It is raw, damaged, ulcerated, and nearly destroyed in some areas.

I asked the team this morning if they thought her bowel was getting worse. They slowly shook their heads back and forth as if to say they were confused and then answered, " Clinically we think she is getting a little better although the biopsies don't support that. Its just very hard to tell between rejection and the CMV virus. The damage caused by both are very similar so to know for sure what is going on in there is just to difficult to diagnose." The pathologist is struggling with his interpretation also. What does this mean for Ash? It means we continue to guess at the treatment and hope that it will work. To date we have no evidence that it has. It is going to take a "very, very long time to heal this bowel and see how she does. We just have to wait and see." As always those words, "long time" cause my heart to ache.

We are hoping to get dressed today and attempt sitting up in a chair. I think she might have the strength to do it. She is far to weak to even try standing at this time, but she sat well yesterday on the floor so I think she and do the chair today. Baby steps. We are starting all over. Hoping not to lose all that she has gained this year, but knowing that recovery is hard.

As always, our rosy cheeked, tiny, baby girl is more than beautiful. I look at her fragile body and melt each time she looks back at me. She is very, very cuddly today and for these moments I am grateful. Moments where I am allowed to just appreciate the very work of God in my life. This child that I prayed for, dreamed of, and desired so desperately. He handed her to us and I am so very honored. I love her so.

Each morning as the mail is delivered I am reduced to tears by your kindness. The music sent is always beautiful, the books well read, the prizes for Ashley Kate so very thoughtful and appropriate, the bag of "fall" brought a smile to my face and touched my heart. Thank you for gathering these gifts, taking the time send them, and for your love and thoughtfulness. As always your prayers continue to carry me along through the long and lonely days and I am so very grateful for each of you who spend your time with our family here through this journal. We are honored to have you in our lives.

10/30/2008

The days are adding up

Its been 20 days since I have seen Blake's smile. Its been 20 days since I have brushed Al's hair. Its been 20 days of separation from two of the coolest kids in the world. I can't even believe its already been 20 days. I miss them so much!

Its 22 more days until I see Dave. 22 more days until I can feel his hug that I miss so much. 22 more days until he walks through the door of our pickle's hospital room and makes her eyes light up. 22 more days.

Its been 25 days since Ashley Kate was in our home. Its been 25 days since she played with her toys. Its been 25 days since she snuggled with Blake. Its been 25 days since she was kissed by Allie. Its been 25 days since she slept in her nursery. Its been 25 days. I can't believe our home has been without her for 25 days. A little yellow house without Ash is not as happy as it is with her. I'm so sad they all have to stay there while she is gone. The rooms are quiet. The toys aren't scattered. I don't know how they do it. They all miss her so very much.

I have no idea how many more days we will be here. We were supposed to put the holidays in motion in our little house on this coming Saturday. Instead it will stay empty of holiday decorations, music, lights, and tradition. November 1st is always a sad day for me to be in Omaha.

Dave's heart is sad. He put my bracelet in his pocket all day to feel close to me. He folded Ash's laundry tonight and smiled at the tiny size of the pickle's skirt. He misses her so much. I wish she were home tonight.

Tomorrow Dave and Al have a date. Shopping at the mall in the morning, lunch at the restaurant, and High School Musical 3 at the matinee. She is so excited, and believe it or not her dad is too. Not so excited about the shopping and movie(he thinks he might puke!), but so excited to have a day to spend with the most beautiful 10 year old girl in the world. Blake's too grown up to get out of school for teachers conferences and went to bed secretly wishing he was back in grade school. Poor guy, slaving away over Algebra and Texas history while the other two are hanging out.

I think Ash and I are going to snuggle up on the rug tonight. I just want to be close to her and its been a few days since we have been able to do that. She spent most of this week in the crib to weak to move let alone be snuggled on a pallet. I'm just gonna breathe in the sweet smell of hair and hold her little hand as I sleep. I love her so much and watching her go through this illness is killing me. It really does get harder and harder.

Dave and I are finally letting it sink in. We've still been in a little bit of denial believing we might come home soon this time, but were starting to accept it. Life for Ash is going to be a series of ins and outs in this hospital and as much as I hate to admit that its exactly what its proving to be. Our sweet girl deserves to have a wonderful, carefree childhood free from pain, but that is not what she has been given. It makes us all the more determined to live each day to the fullest, to allow her to experience as much as she possibly can. How I hope we get her to that castle on Christmas day. We desperately need to escape the reality of transplant life even if only for this one week. Our kids need this trip. They need this time together. Dave and I need to watch them be silly and carefree. How healing it would be to our hurting hearts to have that week to make magic happen for them all. I had such wonderful surprises in store for the 3 of them.

Our hearts hurt tonight. We are lonely. Longing to be together in our little yellow house again. Its not easy for any of us. The guys don't cry near as much as us girls but you sure can hear the sadness in their voices.

Father, you know the pain we are in. You see what our tiny girl goes through each day, and only You can intervene and make this different for her. I ask not because You owe us anything, but I ask because You are merciful and You love us. If You will, if it could be part of your plan for our family, please take us home. Allow us to take her back where she is safe and she is loved. Where the tears don't fall so freely and the days are precious to our hearts. I don't understand and I accept that maybe I'm not supposed to. You must have a bigger plan. Please protect my son's heart. Please comfort Allison Brooke as she lays down to sleep. I'm trusting You to get us through once again. I can't do this on my own. My heart is breaking. Our children are hurting. My husband needs us. You know all of this. Please have mercy on our baby and heal her body. Take us home.

Enough for Today

It's only 2pm and I've had enough for today. I have cried, I have vented, I have fallen apart, I have been angry, I have yelled, I have whatever you can think of, I've done it.

This day has proven to be just as confusing as all of the others. No one knows what to do. Everybody is guessing, making changes, and failing to give any explanation for those changes. It makes me crazy. Every few hours minds change and so does the plan. I am more than frustrated.

I can't even tell you what we are currently treating. All I know is that we are slamming drugs, very strong, dangerous, drugs into her body to treat this and that and this and that. Each of them has an effect on something else and therefore they counteract that effect with yet another drug. For a family who doesn't even swallow a Tylenol I can't express to you how difficult the path we are being led down is for us. Although, I know God knew it would be difficult. We know that we have no choice, but it is more than trying to sit back and watch as each syringe infused into her body causes more and more things to go wrong in an attempt to fix our initial reason for being here in the first place.

I don't know if you have ever lived in a hospital room for more than a few days or not, but if you have then I know you will understand where I am coming from. If you haven't and you truly do not know then I ask you not to give me advice about it. I just need to vent a little and this is my forum to do it. I would advise that if you ever have a choice between being admitted to a teaching hospital and a non teaching hospital then I would choose the latter. In our experience here is the difference. Rounds. Pure and simple. In a teaching hospital, rounds are NOT for the benefit of the patient and the family. They are not to inform you about the plan for your child. They are not to discuss any care with you. They are for the benefit of the students. Plain and simple. You have no right to ask questions or feel a part of or even be included in the decisions made for your child. We have been in several hospitals over the last 3 years. 7 to be exact. We have never felt more on the outside of the circle than we feel here. If I have a complaint about our transplant hospital it is this. Our surgeons do not spend much time communicating with us. If we are lucky we may see them for about 90 seconds a day. They spend more time talking out in the hall with the students following them around than they do the parents.

I would like to inform the transplant "world" that making rounds in a hospital SHOULD be about seeing the patient, communicating with the family(especially the parents of small children), and giving us an opportunity to ask questions of those in "charge" of our childs care. It should NOT be about training the students!!! I don't really care what kind of grade they make on their pharmacy exam. I care about knowing the reasons behind your choices of this drug or that.

As always my biggest struggle while in Omaha is feeling like we have no rights to care for or be a part of the care given to our child. This feeling does not come from our nursing staff. They are AWESOME! Truly, they are. I have only come across 2 nurses in 2 years of care here that I will not allow to touch my baby because I have witnessed them make dangerous mistakes while assigned to us. The doctors are the ones who convey this feeling to us and today it was evident that they are the "Boss" of this place and we are merely the ones who need to be "bossed" around. May I inform them that I am not an idiot. I am fairly intelligent and although I do not have the training they do I do know Ashley's history much better than they do and I will remind them of past mistakes and what we should be leery about repeating. That is my job.

Its been a hard, hard morning. Being treated (and it wasn't just me, it was our nurses as well) as though we are inferior people not worthy of being spoken to is unacceptable to me.

I called Dave in tears and asked him, "What are we going to do? I can't live her for "months and months" and be treated like this again." His answer? "We'll take it one day at a time and maybe tomorrow will be the day that she starts to get better."

Ok, I feel a little less burdened now that I have spewed all over this post and I will attempt to share what is going on with Ash. She is better today. I gave her a bath and dressed her for the first time since Monday. She is receiving more blood at this time. A four hour infusion. She is sitting up next to me on the rug and we are signing together. She is very weak, but to see her sitting up again does my heart good. Her tummy is now working. She has begun to pee off some of the extra fluid because she is receiving lasix every 12 hours. They are raising her Prograf levels again to treat the rejection and they have doubled her treatment protocol for the CMV back to two infusions daily. This is what is changing from day to day and come Saturday when a new surgeon is on service it will change again so just hang on. They diagnosed her with a hernia in the fascia around her stoma sight and apparently with each scope a loop of the bowel is slipping in there and being "strangled" causing the stalling and blockage in her gut. It takes about 48 hours for her to turn back around and this is a cause for great concern. If the bowel is strangled to the extent it loses blood supply then it could necros(or die) and we would lose it. Surgery is the only way to fix this hernia, but it is not an option at this time so we will just wait and watch. Take down is the ultimate solution, but again not at this time.

I am looking forward to this week ending. It has definitely been one of our hardest to date(this admission). I apologize for venting, for rambling, and for spewing, but if I don't do it here then its going to spill out all over someone here. I can't allow that to happen. Hopefully now I will be able to move and remember that tomorrow is a new day and perhaps "his" mood will be a little better. I can at least pray that it is.

Hope your day has been a little more pleasant that ours. We'll talk soon. Trish

10/29/2008

Almost In

Ashley's first round of treatments are almost in. She received her anti fungal earlier in the evening and is now receiving her cytogam immunoglobulin. This is a four hour infusion with vitals being monitored every 15-30 minutes throughout. She has been very patient, but is now running out. She is really fussy and not happy about a lot of things.

I was able to get her to sit up on the rug for about 20 minutes this evening and she flipped through the pages of a magazine looking for pumpkins for me to count. It took all she had and toward the end of the 20 minutes she was fighting to keep her eyes open and was slowly leaning closer and closer into my chest. I rocked her for about 2 seconds and then she was out. This was the first time she had been out of bed(other than me rocking her) since her return from the biopsy on Monday evening. It saddens my heart to see how weak she has become. This past weekend, combined with the events of Monday have taken a toll on her little body and she just has nothing to offer. No energy. No smiles. No sign of her personality.

After we finish with this infusion I hope she will be able to settle down so that we might get some rest. I may be spending the evening in the chair holding her because she seems much more comfortable there. I'll be happy for her sake once the medicines are done. She just feels so yucky and her body aches from them.

There are many things I would like to share, a lot of things on my heart, but I'm just spent. I really and truly am . Its taking far too long for me to write a sentence, so I would be here all night. Perhaps tomorrow I might have a better handle on things. Its been a very trying, stressful, emotional week so far. I hope we don't have many more like this in the future. Sure and steady is what I am hoping for as we try and recover and work our way back home. Goodnight my friends, Trish

Back to Plan A or is it B or maybe C?

Things are really messed up, but for now this is the plan. I forget what plan we are actually on. There have been several of them.

The surgeon reviewed the slides with the pathologist and they have "determined" she is not in rejection currently. The reason they believe her not to be is because the slides show no evidence of crypt death. I'm going to try and explain. On the slide they have a piece of tissue from the inside of the transplanted bowel. They examine it on the cellular level and look at an area of 10cyrpts. I don't really know how to explain those, but kind of think of them as going up and down. Between these crypts they are looking for cellular death. If they find 5 or more dead or dying cells in that area of 10 crypts they are looking at then they determine she is in ongoing rejection. If they find less than 5 then they determine she has had an episode of treated rejection. Last week's biopsy yielded 4 cellular deaths in the 10 crypts. Therefore they say she is not in "active ongoing rejection". I have not read this weeks pathology report yet, but I am to assume that it will support this same finding because the slides convinced the surgeon that she did not have to be treated for another round of rejection. Although very confusing, and not totally clear I have to be happy about this finding. Not being in rejection is the goal. Not having to put her through surgery(which they all acknowledge would be very hard on her in her current condition), and not having to be treated with the nasty thymoglobulin are all good things. I just hope they are sure that they are correct this time. Like I said earlier it has been more than 10 days since it was treated. I really, really hope they are sure.

The surgeon is now convinced(although he was pretty sure the other way this morning) than she does indeed have a CMV viral infection in the bowel that is causing all of the damage at this time. He has ordered that we re-start the gancyclovir, but at 1/2 the strength she was on and only one infusion a day(thank you, Lord). We will also begin giving her cytogam infusions once a day. This the drug that she was given once a month for the first year out of transplant to prevent CMV. She will receive 3 infusions over the next 3 days and then will be reassessd to see what progress has been made.

When I asked which one I would want to choose if I had to choose one I was told, "CMV, as long as we can keep it from spreading." Again, I am going to be happy about these determinations and take it as being a positive thing.

To be completely honest, Dave and I are not sure that they really know. There has been an awful lot of going back and forth and it seems things change from one moment to the next. We do believe that they are some if not the very best transplant team in the United States and that is why we are here. They have as good a chance at being correct as anyone else and so we have to trust them. We are praying for good results. We are praying for her bowel to heal. Her CMV to be gone, and for her life to resume the way it was before she became sick again.

Ash is sleeping. She has been all day. She has not had the energy to sit up since her return from her scope on Monday evening. She is losing strength and that is so, very sad to me. She had worked really hard to learn all that she had and I can see it slipping away. I truly hope that over the next week she will turn the corner and begin to improve.

They Just Don't Know

The last two biopsy's have everyone shaking their heads this morning during rounds.

The transplant surgeon told them to call pathology and let them know he would be coming down to view the slides himself. All of them. He wants them pulled and waiting on him to finish rounds.

Rejection? Infection? CMV? All of the 3? They still can't decide, but they do know that she HAS to be treated if it is any of them and at this time her rejection has not been treated for more than 10 days. That is unbelievable. He is adamant that they figure something out.

If it is(which they still lean very close too) then Ashely will be in the OR with the head of transplant surgery this afternoon or early in the morning while he attempts to place a temporary triple lumen into her chest. She has to have enough access to be able to give the next round of treatment. The next drug is called thymoglobulin. The first infusion will last 24 hours. The main side effects are extremely high temperatures and a drop in blood pressures. Because of this they need access to give her the drug, more drugs to counter act complications from the first, and nutrition. She is currently not receiving any since the nightmare a couple of nights ago with her blood sugar.

Ashley Kate's blood counts have been wiped out from the administration of the gancyclovir. She is unable to really open her eyes, or actually be awake today because she is very, very weak. Her little body is pale and she sleeps now with the help of the Lortab.

Everything is up in the air. No one agrees about her current diagnosis. They all just know that her bowel is very damaged and looks awful. Outside of that we have no idea what direction her care is going to take.

I sit this morning, in the dark, listening to the sounds of classical Christmas, and watching our baby rest. Dave and I are doing our best to wrap our minds around the holidays spent in this room again. We must give the children a choice as to where they would like to go and what they would like to do. More than likely it will be Dave and I and Ash alone again for Thanksgiving. I am afraid that we may just start skipping thanksgiving cause its just not what it used to be. Our hope is that we might be far enough along to at least be outpatient or into the cooperative care program by then. Everyone keeps asking when the family will be able to visit. Unfortunately the soonest visit will be the weekend before Thanksgiving, and if the children choose to go to Oklahoma or Colorado with our families then I will not be seeing them for a very, very long time. Holidays in the hospital are nothing special. There is no magic and no sense of privacy or family. They don't even allow us to have a Christmas tree for our babies(although I PROMISE you we WILL be breaking that rule if we are still here, and I won't even apologize for my rebellious tone in this area). Asking Blake and Allison to spend the holidays here is just not fair and so we choose to allow them to choose. If they come, that is great. We do our best to make it special. If they choose not to come, then my sister's step in and do an amazing job making memories with them. Currently the plan is that I will see at least Dave on November 21st. Oh, how I pray God steps in and turns this around so that I might see the children soon.

At this time we sit and wait to see if we are headed to the OR.

I Want to be them?

A late night discussion last week with a nurse practitioner as we stood by Ashley Kate's bed in the dark and listened to her struggle ended with me stating," I want to be "them". I want Ash to get to be "that" kid."

I was sharing with her that I didn't know how to take better care of our Ashley. I was doing everything I knew how to do. What keeps going wrong? Why are we back here again and again and again? I have friends, transplant family friends, several friends, who never have to come back. I don't understand.

She shared that it had nothing to do with the care Dave and I provide. It was nothing we were doing. Its just the way it works. Some kids have an easier time with accepting their transplants then others and there are no reasons why. Kind of like the person who never abused drugs, never used alcohol, never smoked, took care of themselves, worked out faithfully, and is diagnosed with lung cancer. They did nothing wrong. It just happened. Doesn't make sense.

"Its those kids that we don't even remember. The ones that come, get transplanted, and leave. When they do show up years later for some minor situation we all look at each other and try to figure out who they are."

That's when I said it. I said out loud what I had secretly been thinking for over 2 years.

"I want to be them. I want our Ashley to get to be that kid."

And then I thought. I've thought a lot about that night and that conversation, and I came to the conclusion that my statement is just not true. I really don't want for us to be them. If we were them we would have missed so much. Sure, we would have missed the bad stuff, but we would have missed some real blessings too. Blessing that the Father provided through these long, tough, hospital stays. Blessings that take my breath away and leave me speechless. I would have missed out.

I would have missed the appreciation that I have found for EVERYTHING in my life. From each breath my child breathes on her own to a pile of leaves scattered out my front door.

I would have missed the precious moments that I get to spend uninterrupted as I cuddle my child close to my chest in the late night hours. She has my full attention. There are no thoughts of what I have to get done or that I really need to lay her down so I can do this or that. I just sit and breathe her in. I examine each piece of her tiny face and I worship the God who created her. I couldn't give those times up for anything.

I would have missed the joy, the purest sense of joy that I feel when I look at the smile on her face as we walk into our little home on each return. That look that tells me she knows it ok and that no one will hurt her now that we are back. I will never forget the smile she wears on those days.

I would have missed the friendships. The truly amazing, caring friends that God has crossed my path with that all live in this town called Omaha, Nebraska, Women and girls alike who have impacted my heart with their visits, their prayers, their surprises, their willingness to sit next to me on the toughest of days. Strangers whom God turned into my sweetest friends. Women who love my daughter. Nurses who love my daughter.

I would have missed the kinship I feel each time I read through the comments of her journal. People from across this world that God has brought into our lives. People who encourage me with their willingness to pray day after day for my family. They not only pray for Ash and myself, but they lift up my husband, my son, my daughter. I wouldn't want to have missed out on this experience. The feeling of knowing when you have no words left to pray that there are homes across the land with lights on and people on their knees crying out on your behalf. It is humbling. It truly is.

I would have missed the appreciation I have, the deep appreciation I have for all God has given to us. It takes so little to make my eyes shine. A simple night in our home watching my children be themselves as they come home and relax after a long day at school. To see them laugh. To listen to them chatter about this and that. To be with them. Close enough to hold them and love on them each moment of the day.

I would have missed out on hearing the love in Dave's voice as he calls late into the night just to tell me how much her misses her and misses me. I would have missed the moments of silence as we linger as long as we can before hanging up even though there is nothing left to say. I would have missed the gift of knowing how truly solid he and I are. Our relationship can withstand anything and I have absolute and complete faith and trust in this man who is home caring our Blake and our Allie. I would have missed those hugs. The hugs that he gives me the moment he walks into her hospital room. The ones that make me feel as though he never wants to let go. Its in those moments that I am allowed to melt because he is back and I am no longer alone. I wouldn't have missed the way that feels for all of the world.

I would have missed watching God work in our family.

I would have missed out on His plan. Even though I don't understand I know that He has one and that eventually it will be for our good. For Ashely Kate's good and not her harm. He is working. Its just bigger than what I can see with my eyes.

If I were "them" and she were one of "those" kids then we wouldn't be us. Our journey wouldn't have been the same. It may have been void of all of these gifts and I would not be the mommy to her that He has made me. I would rather be who we are. Through the pain, the tears, the struggle, that lack of understanding, the fear, the everything. I still choose to be us because I know that in being us we only benefit from His bigger picture. I just believe that we do.

So no longer will I allow myself to look at "them" and wish. I am learning to be content with being us and in this moment I am doing my best to be content where He has us today. Although it is painful, it is going to be ok. I know it will be for our good.

10/28/2008

Cycles

It never ends. We scope. Her bowel stops working. She is in a lot of pain. We wait it out in hopes that the nuemetosis infection won't set in. We hold our breath. Its an ugly, ugly cycle. Her bowel is so sick that each time they enter it we have problems. Once again her tummy is growing, she is having no output, and the loops of her bowel are grossly distended. She moans, and moans in pain as she waits for it to begin working again. The most unfortunate thing is that we will be scoping her multiple, multiple times in the coming weeks.

We desperately need some sleep. How I wish we could sleep, and sleep and sleep without interruption. They are giving her Lortab for pain, but it is only lasting about an hour at a time. Then we wait for 5 more until she can have the next dose. So currently she is sleeping one out of every six hours. I am so tired I'm having trouble composing my thoughts.

We are back to the place we were in Friday evening. No stool. It lasted until Sunday morning. It was a miserable couple of days for Ash. Each and every examination is painful. To touch her tummy causes tears to fall from her eyes. She shakes her head no, no each time some one approaches her. I hope this time it passes quickly for her. We have hooked her back up to suction and are trying to decompress her tummy again through her stomach. So far it has not worked. If it doesn't then I don't know what will.

I so badly wish our baby was in her crib back home in Texas. I really hope and pray that this will all end and we will be on our way home some day soon. Her daddy misses her terribly.

Thank you for sticking with us. I realize how difficult it is to follow her journey. There are lots and lots of tears on the bad days, but there are lots and lots of smiles on the good. I'm holding out hope that our good days are come again. Your time here is appreciated.

Here we go Again

The official results still are not in, but the head of the transplant program looked at the slides and in his opinion, his gut feeling, she is still in rejection and has been this entire time. He does not agree that she has CMV (it seems no one agrees about this issue. Some say she does, some say she doesn't)and just feels as though this and all complications she has been experiencing are due to the rejection in her small intestine. He decided to throw in a another round of the steroid to try and calm things down while they wait for pathology and develop a plan. She is currently receiving it.

Things are so confusing right now. The plan changes daily and sometimes multiple times a day. Each week a different doctor comes on service and along with that change comes other changes. They do not know if the next round of treatment(thymoglobulin) will work or not. I asked and they shrugged their shoulders and said, "We have had some luck with it in the past. Some respond well and some don't."

All I can do is cry. At some point I will pick myself back up and be ready to fight, but I can't express to you how very tired I am. I rock our baby and I hold her so tightly. Nothing else in this world matters. My children are my very heart. Some one asked me about the election yesterday and all I could do was laugh. Nothing is important when you are watching one of your children suffer. When you are longing to hold the hand of your ten year old beauty as you walk in and out of the store. When you desire nothing more than to snuggle and fight for every inch of the blanket with you 13 year old son as you watch the World Series. When you would give everything you have to feel the arms of your best friend hold you tight as you struggle to fall asleep through your tears. When what would give you the most happiness in the world can be found inside the walls of a little yellow house in the big state of Texas. The whole world could fall apart and it doesn't really matter. My sweet Ashley loves home.

"This by no means is the end of the road." That's my encouraging news today. She is sick. She is hurting. She has a long, long way to go until she recovers, but we are not at the end. They still have a few options. I'm clinging to those words knowing that God can make this happen. If He will. He can make this happen.

The next few days will be more than difficult for Ash. For sure at least a week will be tough, but maybe, just maybe, she could turn around and begin to heal. Perhaps once her body starts to heal then our hearts will too. For now though they are broken. As broken as her body.

Thank you for your prayers. Sincerely, your words bring me to tears. I am so, so grateful.

By a Thread

That's what I'm hanging on to this morning. If we don't get some kind of encouraging news, any kind, soon then I am afraid this worn and tattered thread that I am holding on to is going to fray and leave me on the floor.

Yesterdays biopsy was the worst I have ever seen. We have no official news but in rounds the doctors were discussing it and the statement was made, " I fear its getting worse and good things are not on the way." How's that for making you feel as though that old, worn out thread is fixing to break?

Last night was difficult. Ashley had a blood sugar of 490 which had us all reeling as we negotiated our way through managing it and figuring out what had caused it. I'm far too exhausted to get into all the details, but its over now and I am so grateful.

The gancyclovir has taken its toll on our baby and her blood counts are all low across the board. Were tallking RBC,WBC,Platelets, Hemoglobin, Hematocrit,etc. She is pale and weak and not able to wake up this morning. She is not responding to the treatment and so I thought we would develop a plan this morning but without pathology reports nothing has been determined.

We need good news. We desperately need some. Its just not coming our way. I'm numb from the crying, the pain, the struggling. I don't even hurt this morning. We're just too tired. I sit and stare at my beautiful baby girl and have no thoughts. I just stare and stare and stare as she sleeps.

If we know anything I will share, but for now we continue to wait.

10/27/2008

Where Are You

I sit here in the dark rocking this child that You gave to me and I wonder if Your here.

She has been through so much and yet still each day it seems that it hasn't yet been enough and I wonder if Your here.

Did You see what I saw this afternoon? If you knew how bad it was going to be why couldn't You tell me. I wonder if Your still here.

Things get harder by the minute and I wonder if Your here.

Things are changing all around inside of her tiny body. I wonder if Your here.

My heart breaks daily. Over and over again. The pain is so real. Do You feel it too? I wonder if Your here.

Our tears fall like raindrops. Hers and mine. I wonder if Your here.

She has band aids on all of her toes. Do you already know? I wonder if Your here.

Her blood sugar has gotten messed up. The shots really hurt. She's so afraid. I wonder if Your here.

I'm trying to protect her. I love her like no other. I'm doing the best job I can and still I can't help her. I wonder if Your here.

Did you see this coming? I had no idea. I feel so foolish, but if you already knew? I just wonder...are You still here?

I'm more hurt than angry. I just can't figure it out...are you here.

We're back in Omaha, God. Do you see us sitting here? We feel so alone. It makes me wonder if Your here too.

I'm trying to find you. It's like I'm stumbling around in the dark. Where are You. Is this where we are supposed to be? Did you plan for today to be like it was? Did You know the struggles that were waiting on her? Do You know how much it hurts to watch her hurt? I need You. I need to know You are here. Please. Help our baby. Heal our baby. Hold us close.

My knowledge of You tells me Your here, but honestly God I keep asking myself where you are.

Investigating Even Further


Last weeks biopsy was a mess. The findings are all over the place and this morning I was told that we just have to go back in and figure things out. The bowel is a mess and no one really knows anything except that it is sick. Really sick.

We have been scheduled for biopsy around 2:30 this afternoon and our hope is that we will have results by tomorrow. I say we hope because we know that didn't happen last week.

Ashley hasn't peed in four days. I mean no more than 30ccs per day. She needs to urinate 160cc every 12 hours. It's not happening. We decided to run an albumin bolus of 250 over two hours and then chase with lasix in hopes of stimulating her kidneys. Its not good on the kidneys, but neither is not peeing. Well, the albumin backed up and blocked her pic line and now we are at a stand still. They are hoping to open the line back up with TPA, but that will take about an hour and a half. Then we still have to get the albumin in before we go to biopsy. Problem? If this line is lost then they want to start peripheral IVs. I don't feel Ash should suffer through multiple sticks because some one made a mistake with her albumin infusion. In my opinion everything can just wait in line. We will take one thing at a time and start with opening this pic line back up. If things run late, then things run late.

She slept the entire day yesterday, but this morning she got up, got dressed, had her hair done, and was sitting on her rug watching Blue. She's not in the best mood, but its a huge improvement over her weekend. To see her dressed and sitting after the trouble she was in on Saturday is huge.

Ashley is stooling 150cc per kilo. That is almost a constant flow of stool coming out into her ostomy bag. She needs to be stooling 35cc per kilo. We are losing almost 5 times the amount she should. This is a huge problem. It lets us know that the rejection and the virus have her bowel torn up and this is why we must take another look today. What is going on inside of her? This may not be the last one of the week. Honestly, I need to hear good news today. Something encouraging. Anything will help. It was a long, long weekend.

10/26/2008

Discouraged

I've done my best to not be, but it is so, so difficult. Tonight I'm struggling. My heart aches and my stomach hurts. I've spent some time reading the official pathology report from Ash's scopes last week and things are not good. Full disclosure? I don't think they gave me a complete picture of what those slides actually showed. My heat sank as I read line after line. Its bad. Its really, really bad. Her bowel is far from being healthy, and it is definitely not normal. As I read the words on the paper the gravity of this whole situation finally sank in. I honestly do not know if her bowel will recover. I don't think they do either. I think its going to take an honest to goodness miracle to get our little one back to the condition she was just a few weeks ago. She has a long, long way to go and an awful lot to accomplish. I am afraid we will be her for a very long time. It breaks my heart. Every single aspect of it. My heart is broken. It's one of those days when I wish I could climb in my bed and hide under the covers and never, ever have to get out. I just don't know how she is going to be able to heal a bowel that is so extremely broken.

When I think back just a mere 2 weeks and 6 days ago it blows my mind. Our baby was so happy. She had no signs. No warnings. No symptoms. How in the world can our world fall apart as she slept? I just don't understand. What happened?

I talk to the kids on the phone and fight back the tears each and every day. I miss them so much. I just want to wake up from this nightmare and find Ashley Kate fast asleep in her nursery, with Allie a few feet away sleeping peacefully with her little eye mask on keeping the light from waking her as I tend to her sister. I want to tip toe into my son's room. That child who I know is leaving our home in just five short years and kiss his head as he sleeps. I go in each night and breathe in the moment thanking God for him. Ash and I are missing precious, important, valuable days with her brother and sister and I don't want to miss another.

I need a miracle. Again. I need God to show up and turn things around. Again. I need for Him to intervene and heal my daughter and allow us to take her back home. I just don't know if He is going to.

The thought of Christmas in this place is killing me. I read that pathology report and my hopes for making to that plane on the morning of Christmas Eve with our princess in tow were basically dashed. I just don't see how its going to happen.

I miss home. I miss my friend. The one I hold hands with each night as I drift off to sleep. I miss my son. The one who encouraged me to just be strong and determined tonight. I miss my Allie. She just "needs someone to help take care of her. She wasn't ready for us to leave again." Oh, how it breaks my heart to tell her goodnight by telephone each and every night.

Our tiny girl lay in this hospital crib tonight and inside of her body the rejection and the virus are trying to destroy the gift that God gave to her a short two years ago. I watch her face as the turmoil inside of her causes tears to run down her cheeks. As she sleeps she crys. Her tummy hurts. I imagine even more than her mommy's heart does.

Hoping for a brighter tomorrow. Praying for healing as she sleeps, and shedding tears until I fall asleep.

Flowing

This morning Ashley Kate's bowel has opened up and is flowing again. I can't express how relieved I am over this issue. Her bowel is not healthy by any means, and she's not completely out of the woods, but her level of discomfort over the blockage is significantly less than it has been. Her tummy is getting softer and softer and she is able to sit up again.

Her CT scan from yesterday has some suspicious areas in the walls of the bowel that they have not been able to decide about. Because of her ilius and blockage we could not use contrast for the scan so reading has given us a better picture than the normal abdominal x-ray, but not the best picture. The surgeon is suspicious of nuemitosis. He isn't sure, but is deciding to jump and err on the side of caution rather than ignore it and wait for things to get worse. Her segs and bands have moved enough over night that in combination with the pictures makes him want to add some antibiotics on board. We are surely hoping he is wrong, and he is too. We will treat her today and if her blood work looks better by morning then we may stop the treatment. If not, then we will assume he was right to attack early and hope for the best.

Ashley slept very little if any at all last night, but is resting comfortably now for the first time in days. She has been asleep for about 3 hours now. Much needed rest for her body to heal.

She is extremely dry. Her BUN is very high and her kidneys have still not kicked in. Instead of slamming her with extra fluid bolus' they have decided to give it some more time. None of us want Ash to lose her respiratory status and giving her too much fluid will do just that(according to her history). All in all we are being very careful.

The good news is that she has no fever this morning. She is resting. Her tummy is softer and more comfortable. Her bowel is not blocked at this time. Her rash has not appeared today.

The bad news is the possible nuemitosis. The lack of urine. The dehydration. The stooling out. One of the most concerning is that her stool output(now that it is flowing again) is very, very high. This makes me wonder if the treatment for the CMV is working or not. They told us we would begin to see a decrease in a few days if it was helping. Outside of the total shut down yesterday we have not seen a decrease. She is still cramping and uncomfortable, but in comparison she is doing much better than yesterday.

My hope is to get her up out of bed a little today. Give her a bath and some clean jammies. She has been naked and looks nothing like herself. I am hoping she has enough energy after napping to endure all of this. I think if she could begin to sit up again her strength may return before we lose it all together. I would love to read books on the rug with her today if she feels up to it. We will have to wait and see.

I've spent the last two nights praying and pleading for His protection over her grated organs. I so badly wanted her bowel to start moving again. I prayed and prayed all night long as I was up with Ash. My heart was overcome this morning to see the evidence of this answered prayer. I think all too often in this situation I get so very tired of asking and asking and asking. I don't know what I'm really trying to say except that my heart was blessed and it brought me to tears to see that the God of the universe took the time to empty out her bowel for us last night. I'm just so grateful.

10/25/2008

Going Back to Yesterday

Yesterday she was silly. Yesterday she was so funny. Yesterday she was full of life. A little of her sparkle had returned. Grandma sent new Blue videos and her eyes lit up. Yesterday I giggled at this precious child and told myself that we would get through this. Again. Yesterday I sat next to her on the floor and concentrated on her beauty. Yesterday I was so in the moment with her and I was busy committing those moments to my memory. Yesterday I was foolish enough to think, "If this is what its like then we'll make it home in no time." Yesterday was really good until about 6pm and then things began to change.

Tonight I'm so tired of concentrating on today that I have chosen to remember yesterday and be grateful for it. I wanted you to see just how good she looked before today.

I love her so much. I love her with every single ounce of everything inside that makes me who I am. I love her more than I ever imagined possible. When she is sad, I am sad. When she hurts, I hurt. Oh, but when she is happy, I am so, so happy. Tonight lets just forget about today and think about yesterday. Good night guys.

video

Causing Problems

This whole CMV thing is a pain. It is the root of all that is happening with Ash yesterday and today(they think). It has caused an ilius in the bowel(no peristalsis or movement of any fluids) and her CT scan shows multiple, large dilated loops of her bowel. All of this is trouble. Her bowel is in a very fragile state. It is weak. It is damaged. It is sick. This this is causing her great pain and cramping and nothing can be given to help.

We are pulling fluid out of her bowel in reverse fashion. Since the bowel will not move the fluid out through the ostomy on its own we have hooked her G-tube up to suction and we are pulling the fluid(mostly bile like) out through her stomach. Kind of gross, huh? Our hope is to help her decompress the bowel and make her more comfortable by not allowing the bowel to keep filling up without a way to rid the fluid. The bowel is sick from the virus so it is causing her to stool out except that none of it is coming out. To leave it would allow the bacteria to just sit inside of her bowel and then we are looking at potential disaster.

Because of the massive amounts of fluid we are getting pulled out of her bowel through her tummy she is quickly slipping over into the dehydration dangers. We are working on figuring out a safe rate to infuse the fluid losses back into her system without overloading her and placing her in respiratory distress.

Currently we are still on the general pediatrics floor and we are doing everything we can to keep her safely here. As long as her lungs don't fill with the fluids then we should be safe.

It has been one of the longest days ever. She hurts so much and it breaks all of our hearts. We have an excellent nursing staff today and an excellent resident who is taking lots of time figuring out how to keep her as safe as possible. If there is a blessing in today's events I think I would have to say it is the people working on her. They have been amazing.

We still have had no sleep. We are both starving and really thirsty. I think I can fix the thirsty part relatively quickly, but the other two are going to have to be put off for a little while longer.

We're going to be ok. If she can manage to keep breathing and not lose this bowel as we fight this CMV thing then we're going to be ok.

Thank you for your prayers today. They are literally keeping me going. I can't thank you enough. Trish

Repeat

I feel as though I am living out a real life re-run on Ash's life. We've been here before. We've done all of this. Exactly like this. Its a nightmare. I had such hope for her. I did not want her to have to go through what she did a year ago this month. It is all too much.

We are taking Ash down to CT scan her bowel. We need to investigate it further to see is she has nuemetosis setting in once again. I still can't believe we are talking about this. The x-rays show that she has fluid filled loops of bowel that aren't moving. This is when things got so ugly for her. I'm just hoping that somehow she is going to be able to escape all of this. Somehow just fall asleep and wake up feeling good again.

When we were told she was in rejection this scenario is all I knew to compare it to. I thought it was going to be just like this because that was our experience with it. We have been here two weeks tomorrow and I had been so pleased and so surprised that she hadn't "really gotten sick" this time. I thought we might have a chance of treating it, and getting back home. It's not gonna happen that way.

Unfortunately its a long, ugly battle and my sweet Ashely is the only one in the fight. The only taking the bullets. I sit back and offer nothing. I have nothing to contribute to her fight. Its killing me. We are both so, so tired. I haven't slept. Haven't showered. Haven't eaten and neither has she. We are quite the pair today. Welcome back to hospital life. Its just the way things go.

Please, God heal her bowel and get us back home. Somehow.

Just Yesterday...

...our sweet Ashley looked like this. Her silly little self. Oh, how I love this girl!


Today, she looks like this. Its been a miserable night and her complications are getting worse by the minute. We are holding on to our hope to stay here in our room. There are rumors of PICU and the lead nurse has already been in this morning to share that they will do their best to take care of her. If it goes to far then we will be moving. I pray we don't have to move.


This is the nightmare I was hoping not to relive. It looks like it won't be avoidable. I just want our silly baby back.

The Longest Night

I'm sitting here just waiting for morning. It has been such a long night. Ashley Kate is very, very sick. Her bowel has stopped completely. It is swollen and hard. So, so scary. Nothing has come out of it since 9pm and it is getting worse by the hour. She is miserable and in a lot of pain. We have taken x-rays all night long and nothing. No answers. She has a fever and has started vomiting. Her body hurts so bad. I, as always, am helpless. I can do nothing. My heart is broken and I fear we are headed down a road we know all too well. I just need things to turn around this morning. I need her to get better, not worse. We haven't had more than 30 minutes of uninterrupted sleep all night long. I don't know what to do. I can't wait for the doctors to arrive this morning so we can get some help for her and hopefully a plan to turn this night around.

10/24/2008

She hurts

She really and truly does. Since 6:00pm she has been in a large amount of pain. Her tummy, her bowel, her abdomen area is causing her great distress. She is pulling out her hair, her eye lashes, biting her own arms, it is the hardest thing I've ever had to watch. I can't make it better. I don't know what the rejection and the virus have done to her insides, but it is causing her great pain. I think its been 5 nights of this now. Maybe 4. I'm losing track of time.

We have used everything in our "arsenal" tonight. We were trying to spread it out, but she is breaking our hearts. The nurses are at a loss. So am I. We can't help her fight this. It really stinks to be 3 years old and be completely on your own to fight this tremendous battle. Oh, how I wish it were me and not her.

We have given, Tylenol, Lortab, and Benadryl. Its not fixing any of this. We were hoping for some relief from the pain and to relax her enough that she might fall asleep. She still moans, and screams out. Her face is twisted and contorted. She hurts really, really bad.

We had a pretty good day until 6pm. Her day started rough with the infusion, but then she settled and went back to sleep. She didn't wake up until 11(she is exhausted from not resting through the nights). Once dressed and awake we played and played. She watched Blue, read books, played with her blocks and sat up at her table and chairs. Things were good until the second infusion at 6. Its been none stop pain and discomfort with very little relief since then. I don't understand why the bowel locks up at night? Her tummy is hard and distended. Very little bowel sounds and once again a blockage of something(we are assuming its mucous again) and no fluid coming out. I know that if it breaks free she will feel a lot of relief. Until then she she grunts, and screams, and moans, and cries.

She has missed her naps the last two days only adding to her exhaustion. Each time I lay her down the cramping and the pain starts. I tried sitting her up this evening and she screamed louder and harder than I have ever heard. I know that Ash has been through much worse(her entire body cavity was opened up and her organs removed to put the donor's in), but she was always sedated. She doesn't remember hurting from all of that. Now she is aware of pain. She is fully awake. She gets it that she hurts. My heart hurts as I stand near her trying to comfort a pain that I can't fix.

I so badly want to have our happy toddler back in our home. The toddler who giggled, and caused as much mischief as she could muster. I want to watch Dave tickle her, and Blake snuggle with her. I want to listen as Allie lay next to her and talk to her as if she knew and understood all that she was hearing about the world of 5th graders. I can't believe we were there just 3 weeks ago without a care in the world. It seems like a life time ago. I think hospital life drains you. You lose all track of time. You are in a different reality. Its not real life. We're locked in a little tiny room, with no sunlight, no fresh air. Everything starts to run together.

I long for home. For yummy smelling candles. Fresh loads of laundry. Schedules. Toys to trip over. Therapy sessions. Ballgames. Lazy nights on the couches with the kids. The sound of Dave's voice as he laughs at Everybody Loves Raymond episodes for the hundredth time. Dinner messes. Chaos. The silence in our room is so loud. Its a reminder that they are not here with us. Ashley Kate doesn't talk. I talk to her and she just smiles, but she doesn't make a sound. I miss conversation. Home is where we belong. Its where the world is locked out and everything inside is just right. I miss that little yellow house and all it holds. Ash misses it too.

Questions and Answers

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

1. Have we posted the room number yet?

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

2. What is the address I am staying at?

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

Nebraska Medical Center
Ashley Adams #6472
42nd and Dewey
Omaha, NE
68198

3. What size is Ashley wearing these days?

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

4. Is CMV common?

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

5. Are they treating her with Gancyclovir?

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

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

6. Will we consider moving to Omaha?

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

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

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

8. How successful is bowel transplant?

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

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

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

9. Would we do it again?

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

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

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

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

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

Lastly I will answer this question.

Do I need anything from Target?

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

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

We're Ready

We've read it all. Heard all of the bad. Listened to the warnings. Now we're ready.

Let's treat it, not allow it disseminate through her bowel into the rest of her body and get rid of it. That's our approach this morning. We are desperately praying for some relief for Ashley with this treatment. In 3 or 4 days we will be able to tell something by her symptoms. Hopefully her cramping will lessen and her stool will start to decrease. She is "up for multiple scopes over the next month". The scopes will show us on the cellular level if she is getting better.

Its the exact same "tightrope"(our surgeon's word this morning) that we always walk. Trying to walk between rejection and infection. How do we protect her organs while treating CMV? We really don't. Low levels of prograf, but that's all we can allow while treating CMV. There are so many bad directions this thing could take, but after a day of educating ourselves, a night of pleading with the Father, and a morning of wrestling with it all I have decided she can do this. She really can. Some transplant patients get through it with no other complications. Some it gets very, very bad for. We want to be the one without complication and our surgeon agrees. Let's be that patient. He told me he is going to be positive and not expect her to get any sicker with this thing. That's all I needed to hear. I'm going to join him.

Could she reject again while treating this virus? Yes. She can. I'm praying she doesn't.

We are almost positive that Thanksgiving will be spent here in this room. That doesn't mean I'm not leaving room for God to pull a fast one on everybody and get us home. It just means that it is a real possibility. It will make our 4th in a row in the hospital. But Christmas? I'm not willing to accept that just yet. I will hang on to that hope until the flights leave without us on them.

I have a lot going through my mind. Lots to share, but honestly don't have what it takes to do it at this moment. Its proving to be a really uncomfortable, painful day for Ash. She can't get out of bed. Her tummy hurts way too much. She hasn't peed for 2 days now. We're working on that.

Thank you from the bottom of my heart for your prayers and encouragement. You continue to carry us when we can't quite take ourselves where we need to be. Thank you so very much for loving our sweet Ashley.

10/23/2008

Grasping It

Some time has passed and I've done a lot reading. A lot of crying. A lot of searching. I'm doing the best I can to grasp hold of the new path we are going down. It seems as though its always something. Something I never saw coming and had yet to learn about.

Basically the pathologist called this afternoon to share with us that something else was found on the slides from Ash's biopsy today. Something that didn't show up on the stain until today. Something that pretty much changes everything as far as our hope in getting closer to home anytime soon.

We went from being told in rounds this morning that not this week but possibly we could discuss it this time next week to weeks and weeks and months. That in itself is devastating to me. I don't know if I've told you lately how much I miss our kids. How great they are and how very much I love them. The hardest thing for me to swallow is the length of separations we are forced to endure as Ash battles illness after illness. If only Omaha were close to Texas, then I think my coping skills would be a whole lot better.

Anyway, they found spores. Viral spores of CMV in Ashley Kate's bowel. What does this mean? Lots. It means that the pieces are starting to fit together and that the severe abdominal cramping, the high unexplained fevers, the aches, the high stool output, all of it are beginning to make sense. She began treatment for it today. An IV infusion twice a day for an indefinite length of time. In 3 weeks we will know if her body has responded favorably. If it hasn't then it gets uglier and we try a new drug. A drug that she can only receive here. If that still doesn't work then we try the 3rd drug. Again it can only be given to her here. The treatment may need to last for months. Yes, I was told months. Best case scenario, drug number one works with her body and we may be able to transfer in about a month. Barring any secondary complications. Now it gets tricky. At this time the virus is not in her blood stream. It has a chance of going there. If it does(her bowel walls are very injured and very weak and it could pass from the bowel throughout her system) then we have the potential for lots of trouble. They actually used the word ventilator when informing me of it today.

The biggest blow came when they told me, "We have no idea if she was ever in rejection or if she has been battling this CMV. We will never know. All we do know is that her bowel is sick. She may have had the rejection and contracted the CMV, but we will never know for sure."

The potential for danger is there. It is real. It hasn't happened yet, but it could at anytime.

The next blow came when they told me she cannot be immunosuppressed while fighting this virus. What? That's what we have been doing daily for her for the past two years. Compromising her immunity on purpose to keep her organ grafts safe. Now what? We stop all immumosuppression? For the first time in 2 years she has not had her meds tonight. On top of being told this, remember the statement from this morning? "We have her immunosuppression all messed up." It is really, really high today. What does this do to the new found virus?

This is all so confusing. CMV for you and me is no big deal. CMV for Ashley can be devastating. There is no way to tell what will happen, but they did share with me some of the awful possibilities and it rocked me to my core. All I could think was, "not again. not again. not again."
Do we, does she have the strength to do all of this again?

In addition to the emotions that are enveloping about Ashley Kate's health are the very real emotions of being away from home, from those we love, from the holidays, from all our surprises had in store for the children, from privacy, from Dave, from Ash's "normal life". My heart is broken again. It is bruised. Like a bruise that never quite heals. It is always sore. It is always there being bumped again and again and again. It hurts.

The last thing I expected to hear today was more bad news. I was getting hopeful. We were recovering. We had mucosa and villi present. We were going to heal and get home. Now I am informed, "Too bad that you don't want to live here for the next couple of months." How easy it is to say that when you have never lived like this. Months of separation from your children while one struggles to survive. Months away from you spouse, your best friend. Months away from all that makes you feel safe and secure. Your right. Too bad for me. Be thankful its not you. If it were you would understand the tears that I am fighting back so that you don't see them fall from my eyes. You leave this hospital each night and go home to your family. I sit here each night and try to comfort my child who cries herself to sleep each and every night wondering when I'm bringing Ashley home. Your exactly right. Too bad. I sit here and rock a baby girl who doesn't understand why her tummy hurts so much and just wants her daddy. Too bad. I listen to my son over the phone and I hurt because he feels as though he has to be strong for me. At 13 he has to show me strength so that I don't fall apart on the line. Too bad. I listen to my husband's tired voice as he has nothing left to offer at the end of a day. Just a broken heart.

It really is too bad. Tonight we hurt. Plain and simple. Some days it doesn't even seem real. Are we really doing this again? Tomorrow we may have a grasp on this twist in our situation, but tonight we cry and we hurt. Our baby wants to go home. She waves "bye, bye" and points to the door each day trying to convince me to get her out of here. It really is too bad. She just doesn't understand and tonight neither do her mommy and daddy.

Broken, Bruised, Betrayed?

If you come to this site looking for bright, happy days and silly stories then I can't deliver. Not now anyway.

Dave and I have just received some very bad news concerning our sweet Ashley and we are hurting. Really, really hurting.

I can't talk about it at this time. My heart is broken. My spirit is bruised and I am hanging on to everything I know to be true and not to what my heart feels at this moment so that I do not allow myself to feel betrayed.

We will not be going home anytime soon. Ashley Kate is not in a safe place in her recovery at this time and the potential for things to get really, really bad is very, very real.

I really can't do this right now. As soon as I can I will.

A Plug?


Remember me posting about the excessive amounts of mucous found during Ashley's scope?

Well, from what we can figure out it seems that the mucous formed a plug and basically caused all of the hours of discomfort Ash was having yesterday. At some point(after giving her some kind of something? I'm not sure what it was. Kind of described to me like the old time Castor oil) the plug broke free and the fluid came gushing out of her stoma into her ostomy bad. Like 375ccs in less than 2 minutes! Ashley was screaming and extremely uncomfortable, but once it broke through she was able to relax a little. She continued to have abdominal cramping and lots of pain, but eventually she drifted into a fitful sleep and although exhausted this morning she is stooling freely. All I can say is that I am thankful it wasn't the more serious complications we were fearing, but at the same time I hope it NEVER happens to her again.

She obviously doesn't feel well this morning, but she isn't screaming and moaning. I am so thankful she is feeling a little better. Last night was miserable and frightening.

The surgeon just rounded and said it all makes sense. We get lots of mucous from the "mucosa" (the lining of the bowel) and that Ashely's bowel is severely injured from this episode of rejection. She is "far from it being healed and all better" so he wants to scope again on Monday. He said the pathologist officially said that there is "treated rejection" not "healed rejection". Until the pathology comes back with word that the bowel is healed then we tread lightly because she could have the rejection begin to spread again. I did not realize that until this moment. I thought she was in the clear, but apparently not. This is his explanation for the large amounts of stool continuing without any positive culture results. She's looking at a long recovery, but it may not all have to take place in Omaha. I'm holding on to that hope. He said the good news is that she has mucosa returning and in the initial pathology results there was no mucosa seen. So I shared with him that I am going to be thankful for that. We have mucosa. It is in the process of healing, and some day we may get a ticket to go closer to home. We are all working on that.

The other issue he shared with me is this. "We've got her immunosuppression all screwed up!" He said, "I don't know what is going on with that." Her levels of both drugs are extremely high making the hospital a very dangerous place for her to live. She literally could catch anything. So I said, "Basically, I don't allow anyone to touch her?" He laughed and shook his head and said, "Basically. We're working on the problem."

So the long and short of it? I'm thankful she is recovering. I'm hoping the rejection does not begin to spread again. I'm going to be even more diligent with limiting those who enter our room(their gonna love for me this one! Just kidding. They are actually pretty great about it this time.) She is weak this morning, but not screaming in pain. Her daddy misses her like crazy and requested this picture of her even though I warned him she doesn't look that great this morning. He doesn't care. He needs to see her today(sorry about the hair. She's refusing to have it done today). I've got to figure out how to run the laundry back and forth across the hospital(I hate doing laundry here and it just reminds me how thankful I am going to be when I get to go home and do load after load after load in our little yellow house). I miss the kids like crazy. God is still good, and He continues to bless us even during these difficult times.

Hope your day is blessed. Trish

10/22/2008

Its getting ugly

Ashley Kate's level of discomfort is getting down right ugly. Her face is twisted. She bites her lip. She scrunches her eyebrows and holds her breath. Things are changing and as the afternoon has turned to evening her level of pain has increased. We are very concerned. At this point her bowel is not distended but it is changing. You can not even get close to her tummy without her screaming. It is very, very tender. Her stool output has decreased so drastically that it has almost completely stopped. I emptied close to 600ccs between 9am and 12pm. Since 12 pm I have only emptied 100ccs. Thats in an 8 and 1/2 hour period. Its getting really ugly.

We wanted her stool to decrease, but to stop or slow that drastically only points to problems. Problems that could easily be very, very serious. Initially we were concerned about a perforation, but now I think we feel sure that there is no perforation. We are leaning toward an ileus. This is basically when the bowel ceases to function and there is no peristolisis(movement) and things just sit still. This is bad. Last year it almost took her life. Once the ileus set in she got nuemetosis(?) and it was very tense in her room for weeks as we wondered if she would survive. We took an abdominal x-ray, and it appears to be clear so we are left guessing as to what is taking place inside of her bowel. I've said it before, when your dealing with a transplanted bowel its just really, really tricky. There is no easy way around these things.

Her rash has moved to her hands. I don't know if you were with us last year at this time(you can search last Octobers posts for pictures, but I warn you they are very, very disturbing), but once it moved onto her hands, by morning the skin literally sluffed off and she looked as though her hands had been burned. She had raw, weepy wounds left and it was very, very painful. My hope is that is not going to happen to her again. We can't figure the rash out. The identical same thing happened to her a year ago and it hasn't happened since until just this week as she battled her rejection. We are guessing it is something her immune system has developed as it fights the rejection or perhaps it is the response her body has to the treatment. Either way it is frightening.


Ashley hasn't rested all day long. She is in pain. She is grunting and moaning. She can't breathe normally because of the pain. She has a very high heart rate and blood pressure. All signs of her discomfort. Narcotics will only cause more slowing of the bowel and won't do anything to help. We are stuck using Tylenol and it can't touch the discomfort she is in tonight. We are also using Benadryl to try and relax her enough in hopes that she will eventually rest.

I can't hold her. She is rolled into a tight ball and crying each time I try to rock her. She looks to me for help, but yet I think she knows there is nothing I can do to make it better. When Ash hurts this bad she sticks her tiny feet up above the crib railing for me to rub them. It somehow distracts or comforts her. It is sweet and heartbreaking at the same time. I rub and rub and rub.

Seeing Ash hurt is miserable. Our sweet baby doesn't understand. It is the hardest thing I've ever had to do. Standing by and watching the bad days play out in her life. I wouldn't wish them on anyone, but oh the joy she has on her good days. When Ashley Kate is good she is so, so good. She has a presence about her. A look in her eyes. They sparkle with happiness, with joy, with love. She is so deserving of those good days. On the bad ones she truly suffers. If only I could make all of her days good. If only I could figure out how to take the pain and the "owies" away from our precious little girl. I do not understand and never will. Ashley Kate pays the price for actions that were none of her doing. The innocent always suffer. They truly do.

In no way am I comparing her to Christ, but its days like this that I am reminded of the price He paid for me. Actions that were none of His doing. He was the innocent. He did suffer. He truly did. I do take comfort in knowing that the God of the universe knows my heartbreak. He watched His child suffer too. He understands the brokenness in my heart.

Results

NO ACTIVE, ONGOING REJECTION!!! That's good news.

Now she has to heal.

Even though the initial stool cultures came back negative for C-diff they have decided to send two more to check for it again. She acts as though this is what she has(other than the smell). Her cramping and stool output still points to it. Sometimes a false negative will come back and it can take up to 3 cultures to get a positive. This is what I have been told anyway. I don't want her to have it, but if she does then we need to know for sure so it can be treated.

Ashley's bowel is still very angry. It has a long way to go until it is functioning at the level it was before rejection, but I will take and angry, healing bowel over an active rejecting bowel ANY DAY.

Dave and I are thrilled with the results and are so very grateful for your prayers. We wish she hadn't gotten a secondary issue, but now that she has we have to wait for resolution. She's having an icky day. Tummy aches. Fever and now the rash has returned. Its crazy how it travels and then disappears and then re appears.

I have no idea how long we will be away from home, but I do know that a good biopsy report puts closer than we were. I am truly thankful.