Swirling Around

The emotions in our hearts and minds are swirling around and around. We've been up and down and back up again. Its such a ride. An exhausting, emotional journey.

Ash is doing as well as can be expected today. Transplant life is hard. There is no other way to explain it. As you can see things can change on a moment by moment basis. The tiny bodies of these children have been violated in the worst ways imaginable and they are fragile and susceptible to events that those on the outside of this world find a hard time believing.

So what happened and why was Ashley Kate opened back up this morning? What changed? Yesterday morning Dave and I were aware that Ash looked different. She was weaker than she had been the previous day and evening. Her skin color was off even more than it had been. Not just a yellowing, but almost a greenish tint to her color. She wasn't crying out, not complaining of anything, but she was different. The look in her eyes and on her face caused us to be a little concerned. Ash had been moved to what is called "step down status". This means that she was doing so well the previous 24 hours that they classified her as this and allowed her to be off of the monitors. No more lead wires, constant blood pressure checks, pulse oximeter monitoring, etc. etc. Just a more comfortable way to live when in the hospital and a place we had yet to make it to this admission. In step down you are technically allowed to move to the pediatric floor and out of ICU. Yesterday morning I learned from the fellow that the lead nurse had called her at midnight to get permission to make Ash move to the floor. She was promptly told, "NO". The fellow shared with me that the team was not ready for this move to take place because we were expecting a very difficult central line placement to take place early this week and moving her would be a waste of time only to make us move back for her to be monitored after the placement. I asked her if I should get things ready in case they tried to bump us again and she said, "NO, they have to have our permission and they aren't getting it." So, in light of this new status we were assigned a float nurse from an adult floor for yesterday's shift. Nice enough lady, just VERY unfamiliar with Ashely or the pediatric intensive care unit, but since we were the "step down" patient we got the float.

While I was changing Ashley's wound dressings from the ex plant operation I noticed a change in the color of discharge on the gauze. Dave and I discussed the color. It was no longer a sirus looking fluid, but now a green color. Similar to her new skin color. We finished her dressing changes and I stepped out to the nurses to station to tell the nurse about the changes. She was unconcerned and today we found out that no mention of this conversation was recorded in her notes for the day. Her lack of concern made us feel that perhaps it was a normal part of the healing going on in Ashley's body. We new Ashley was very weak and very dehydrated and we assumed her changes were due to the severe dehydration her body was undergoing. We dressed Ashley Kate and took her down to see her party. She spent the evening in her bed resting and watching the balloon and bubbles float over head. Our guests would visit with her by her bedside and enjoy the celebration of her life.

She remained down stairs for an hour and then we rolled her bed back upstairs and her grandparents sat with her while Dave and I visited with the guests. A couple of hours later after the party had been cleaned up we returned upstairs. At some point during the middle of the night Ash's behaviour changed. She became increasingly uncomfortable. Crying, grunting, and moaning for ever hour of the entire night. She was receiving round the clock infusions of every single medication on her med list in an attempt to help her gain a comfortable place. It never occurred. First thing this morning our new nurse and I were discussing the changes in Ashley and I mentioned the color of discharge on her gauze from the day before. The look on her face changed and she became concerned. The pain in combination with the green discharge told her things were not right inside of Ashely's body. At this time the fellow came in for pre-rounds, looked Ashley over, saw the new color of discharge and told me she would be in the OR in less than an hour. It was emergent.
Things began to swirl. The initial thought was that the 3inches of remaining donor bowel had perforated and leaked its contents into her body. Once inside the surgeons could not find a hole, leak, or perforation in the bowel. What they did find was a body cavity full of green, infected, fluid that had collected in the space where the majority of the bowel had been removed. It began after surgery last Friday night and continued to sit inside of her all last week until it began to become infected. They did a complete "wash out" of her abdominal cavity. Sent the fluid to be cultured to see what it is growing and now we are waiting to see how Ashley's body is going to continue responding. Currently she has had no fevers and no sign that the infection has spread into her blood stream. Still we wait knowing that at any moment things could drastically changed for her. You may wonder how much more drastic life can get than opening up a 7 inch incision the length of her torso? Trust me it can get even worse than this. It just can.
Ash is in a great deal of pain. She is very aware that the boo boo on her tummy is the cause. She is crying and patting and rubbing the dressing and showing me where it hurts. We are giving her the maximum amounts of medications she can have every 2 hours. She is finding some relief initially and then it begins to wear off over the 2 hours. We will continue this throughout the night.
So how do we grab onto any measure of hope when her life literally swirls around at such an alarming rate? We do what we did last night. We live. We love her. We surround her with those people who are invested in her life and her fight. We allow them to love on our daughter and to celebrate her life. Every single day of it. Dave and I are even more committed to providing the very best quality moments for the three of our children now more than ever. They deserve to look back on their childhood and know without a doubt that it was good. Even in the midst of such pain it was still good and they were still blessed.
Last night the room filled with people who love our baby. Dave and I both choked up several times during the celebration. We fought off the tears and tried to smile and just BE there. Completely present in the midst of those who came to celebrate and express their love for our family. There are no words. Honestly, what do you say to those who have invested in our family during the hardest years we have ever had to endure? Those who have prayed us through the fires that are constantly trying to consume us? Those who have given of themselves to our daughter? Words seem so inadequate. So very trite. Please know the depth of our gratitude. The depth of our love. The depth of our appreciation.

To my sisters and my brother and their spouses, you are truly our very best friends. How blessed we are by our Father to KNOW that you are with us every step of the way. Thank you for loving us deeply. Thank you for always giving your all when it comes to our Ashley and for making sure that you did not miss the biggest celebration of her life. 5 years! She's made it 5 years. Did you ever imagine last night would happen for our gherkin? Remember those uncertain days you each rocked her in the NICU in Dallas? Remember sitting by her bedside in weekly shifts those initial days post transplant? Remember the day our God gave us our daughter and the moment this journey began? You guys were there then and your here now and Dave and I LOVE you for it. We truly do. Thank you. Be safe as you travel home. We hope to see you again on the other side of this transplant journey in our homes instead of this hospital.

Our pictures of the party were taken professionally last night and as soon as I have them to share with you all I promise I will. My camera was never even turned on and it was a blessing to know I could just BE at the party and not worry over capturing it. I will leave you with an image captured by one of my sisters. Just know that it was a magical evening and I look forward to showing you and sharing with you all the details as soon as I can.



Thank you for loving us. For praying us through today. For staying with us. Its not easy and knowing that its not makes each of you all the more precious to our hearts.