Putting it all together

Sweetly Sleeping with toy Lollipop in hand

Around 7pm last night things all began to make a little more sense to us as we figured out just exactly what Ash had gone through in the OR and then put it all together. All I can really say is that it broke our hearts for our sweet girl. She's been through a major surgery which is not at all what we thought would happen to her when sending her back for a line placement.

Ash spent yesterday being miserable. She was in a lot of pain. I knew it was to be expected for her to be fairly uncomfortable with the many attempt made at threading the wire into the veins. We've seen her go through that before, but never had we seen her endure what they call a "cut down". Dave and I were thinking we would find a small, perhaps about an inch long, incision underneath her dressing, but we were SO wrong. Ash just couldn't take it any longer. Her skin was raw and blistered and she was clawing at the incision in her neck and so the nurse and I decided we needed to change her dressing(a day earlier than desired) to see if we could make her more comfortable. The screaming and growling sent Dave from the room. I have never seen Ash grind as hard or bear down and scream that hard in all of her life. Here I was standing above her, pulling the dressing away from the site and trying my best to give her some type of comfort as the tears rolled freely from us both. It was a miserable experience and then I saw why. Her neck, just along the jaw line has been cut about 2 and 1/2 inches across. The incision shocked me and literally took me to knees on the floor beside her bed. The bruising found clearly shows that the two side were held back by some one's hands as the surgeon had to "cut down" through the layers to locate this large collateral vein that was identified on the ultra sound. Ashley's neck is in severe pain from the trauma that she endured. The depth and size of her incision clearly pointed to her blood loss. When I spoke to her surgeon last night he said assured me that yes she had lost a LOT of blood on the table.

Her beloved copy of "Goodnight Moon"

Healing from this incision is going to be difficult because of where it is on her neck. If you haven't noticed(yeah right!) Ashley has what is called "moon face" as a result of the steroid she is forced to have each day. She has a lot of extra "fat" or swelling in her neck and cheeks. Look closely at her pictures and just imagine how painful it would be to have that lifted up daily to have the dressing changed on an incision that is sitting underneath it. Honestly, it is killing me inside to do this to her. I can't even believe the turn of events of the last few days. This was not supposed to be this hard on her and the guilt I feel for agreeing to this is overwhelming. None of us could have imagined how it would turn out. We thought she was "just having a line placed" not like that's not a big deal, but it is something we parents of chronically ill children have sent them for over and over and over again. I guess you might say it becomes routine? Although I've never adjusted to having her taken from me and going to the OR. I don't think you can adjust to that because it feels so "not normal".

The idea of having a medi port placed in her was quickly ruled out by her transplant team. In all reality they call the shots because of their expertise and experience with Ashley. If they say no, then we say no. We have that much trust and respect for them. It's a little disappointing, but I knew that I had never seen it done to the bowel transplant kids in Omaha and I already knew what their answer would be. We had to ask anyway just in case we had the opportunity to make life a little easier on Ashley Kate.

The current plan is to sit still through today and give Ash the support she needs. Blood, albumin, balancing electrolytes, etc. We will begin giving her a "thimble full" of formula. 5ccs an hour to give the gut a trial run and then increase to 10 in the morning. Discharge is being discussed for tomorrow. Then from there I will bring Ashley back over to clinic each and every week to make adjustments for her. Also to keep a close eye on the healing of her wound.

My hope is that her day will be easier than yesterday. Each day the pain should lessen and she should begin to return to feeling more normal. As I look at the bandage on her neck my heart sinks knowing that before this all of her "battle scars" were hidden underneath her clothes giving my heart great comfort in knowing that someday she might have the opportunity to grow up, live a normal life, and have no visible evidence of her fight for it. That opportunity is lost and now she will bare this scar for all to see. I just can't let go of the dream of her growing up to put all this behind her. Kind of silly and naive on my part I suppose, but thats my mommy heart toward this child. I just love her so much and want the absolute best that life can be for her.

Allie has her last soccer game this morning and we have no opportunity to get there for it, but she will be playing as a guest player next weekend in a big tournament so we are all excited about watching her then. Blake is actually playing in Louisiana this weekend and we have no opportunity to make the early game, but perhaps if Ash is doing better this afternoon then as Dave's mom is traveling by toward Blake's tournament we may switch places with her and spend the late afternoon and early evening with Allie as we watch Blake do what he does best. I think grandma would like to spend some time with Ash. All of this hinges on how she's doing of course, but it may happen. We'll just see.

This life we have been given the last 3 and 1/2 years has been filled with some very hard times and some very broken hearts, but more than anything it has been filled with God's mercy and His grace as He placed the very desire of our hearts into my hands that August afternoon. Just the idea of my sweet Ashley that day changed the very core of who I was and formed me into the person I am today. For that day and each and every one I am given with this child I am grateful. More than you will ever, ever know. She is a gift and defines the meaning of it in my life. A beautiful surprise that came so unexpectedly. God is very, very good.