She will leave fingerprints all over your heart
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.
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.
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.
Ash just got back in her room. I was right about that hospital time thing... Trish will update later.
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.
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.
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
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.
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.
...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
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.
...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.
...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.
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!"
Or signs if you want to get technical about it.
... 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.
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.
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.
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.
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.
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."
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.
...about the good. Even in the midst of this suffering I was able to be blessed by a few things I saw today.
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.