Saturday, December 15, 2012

A Message from Addison's Mom

Addison Dayan Scott


Posted 48 minutes ago
It has been two months since I held Addison in my arms as she took her last breath. It seems way to long and heaven is so far away. It was a miracle the day she was born and she was a miracle the day she left this Earth. Though Addison's life was short she touch so many lives. She provided more love and hope than I ever imagined. Im still in shock she is gone.
The last two months are a fog. There is a lot I don't remember. I remember getting the voicemail that Addi's autopsy results were in. Danny and I made the decision that we didn't have the strength to return the call for the results and decided to leave town for Thanksgiving. A much needed escape. I remember going through the motions, just like we continue today. We are so thankful for the family that was there for us. We enjoyed our time away and though it was a fog, it was nice to see familiar landscape and we appreciate the love of family. Thanksgiving was hard, her birthday was harder, December 2nd was hardest.
Last week I made my first returned phone call. I called the transplant team for the autopsy results. A hard phone call but I yearn for answers.
This is what we know,
Addison recieved her heart transplant on the full moon of September 30th. We were amazed after 16 days on the transplant list we had a heart. We rejoiced, we cried, we grieved for the donor family. Knowing Addison had high PRA levels being at 64% she had plasmapheresis before going into the OR. This removed the circulating antibodies where the whole blood was withdrawn from Addison. The liquid portion or plasma is removed from the blood and replaced with all its red and white cells. This was done to prevent rejection.
We called family and were amazed at the out pour of support and love. My sister Shelby and her boyfriend Ryan jumped in the car to make the 4 hour drive to sit and wait for Addi to come out of the OR. My friend Libby dropped everything to sleep at RMH with Savannah so Lacey could calm our nerves while Addison was in surgery. We stayed up all night, drinking starbucks, praying, laughing, cutting out Long A's for Savannah's homework, anything and everything just to keep busy. A waiting room full of hope.
After Addison came out of the OR alive and thriving I felt I was breathing for the first time in 4 years. I knew transplant was trading one disease for another, I knew it was going to be hard. But I honestly felt relief. She did it. Addison received the normal transplant protocol. She received the "RABBIT" She had steriods, ATV, IVIG and was started on Cellcept and Neoral. All to prevent rejection.
Addison thrived. She was eating, walking, running and laughing. Addison's high intellegance continued to mesmerize us in every clear sentence she spoke. She continued to speak of God. After Addi was discharge we went back to our room at RMH. Addison being immune suppressed we switched rooms to the bottom floor away from all other families. As we walked to our room, Addison looked up at her dad and I and said "There are angels in this place" Danny who at that point was white as a sheet watched me as I got down on Addison's level and asked "How do you know?" And she replied "God told me"
We spent the next week with Addison learning her new medications, watching her eat the largest amounts of food I have ever seen her devour, reading books, playing on her Ipad (Addi's favorite toy) going on long drives dreaming of what the future was about to hold for our once again "new normal"
Then the fever came. It was low but there. I called transplant team and was told to watch her closely looking for any other signs. I made Danny go to Super Target and buy 3 more thermometers. I was determined to find a false reading. The fever continued to get higher.
Addison showed no other signs other than fever and was re-admitted to run tests looking for answers. All tests came back negative. She had an echo and blood work at that point which showed great function and no signs of rejection. Blood and urine cultures came back negative. It was assumed she had an infection. What else could it be? At this point Addison's energy started to decrease and I knew at that point something was incredibly wrong. Just like on September 11th when she decreased in heart function so fast, again this was familiar territory. It was fast and she was declining in a hurry. She started breathing faster just like she used to breath after her Norwood. She was then taken from the stepdown unit to the Cardiac ICU. A all to familiar place. At this point we had Lacey and my sister Shelby take Savannah back to RMH as we were very unclear of the hours to come.
Again, transplant team, her cardiologists and surgeon filled her ICU room to do another echo and to everyones dismay Addison's function was depleted. Her kidneys were enlarged and it was bad. She was started on milrinone. Again just like before Fontan, I wanted 2nd opinions, I wanted 3rd opinions, I demanded answers. My favorite cardiologists in Denver (a long time cardiologists from Boston and heart mom) as well as her colleagues started making phone calls. They called Boston, they called CHOP and Mayo, everyone searching for answers. After just hours of being in the CICU and on milrinone Addison went into cardiac arrest. We were ask if we wanted them to bring her back, I remember falling to my knees screaming "yes"
After hours of CPR Addison was safely put on ECMO. Addison was started on heparin and was completely anti coagulated. At this point everyone came. Everyone over the last 4 years came. Every cardiologists, every surgeon, every anesthesiologist, neurologists, ENT, respiratory. Everyone who new Addison's strong spirit came to help. They came to attempt to add knowledge to save Addison. Everything was so unclear. It was decided Addison would then have another round of plasmapheresis as it was starting to become apparent she was rejecting at some level. After that she was taken to the cath lab to have an ASD hole placed in her heart to relieve pressure and take 3 biopsies looking for rejection. After cath, Addi became even more unstable, her heart rate dropping needing full support of the ECMO circuit. At this point it was found that Addison had a major clot in her heart. A clot that filled her entire left ventricle. Being on heparin this was a huge shock, yet again. At this point, no transplant center around the nation had heard of this type of heart failure in a so recent heart transplant patient. Addison's kidneys and liver were failing, Addison's heart rate was 0. At this point we were told there was nothing left they could do to save our miracle baby.
At this point my mom came to be with us, my dad and brother were on the way as we took Savannah down the long CICU hallway to say goodbye to her sister. After I spoke with Savannah's hospice counselor in GJ and Savannah spoke to our pastor coach at Childrens and the child life specialist prepping Savannah for what she would see, we made the decision Savannah needed to see her sister. Savannah whom has lived more days in the Cardiac ICU than any other child I have ever met, kept saying "the cardiologists are not doing enough, they need to try harder, she is my sister" This brave heart sister needed to have closure. We walked her into the room where Addison laid on a bed while EMCO kept her alive. Savannah immediately read the monitor. Addison's cardiologist sitting next to Savannah and I, my mom sitting next to Danny, Savannah asked "Why is her heart rate zero, why is her blood pressure so low, why is her intubation tube warm?" As tears fell from all our faces the cardiologists grabbed Savannah's hands and told her that she was wise beyond her years and in all her time at Childrens she had never met a wiser child who knew the in's and out's of monitors, medical equipment and her sister. Savannah cried and said her goodbyes to Addi and then Lacey took Savannah out of the CICU.
At this point Addison's team of doctors asked if I wanted to hold Addison. I did. I wanted nothing more than to hold my daughter for the last time. After she was born she was put on my chest to take her first breaths and God willing, I was going to hold her while she took her last breaths.
They told me after she was extubated and they turned off ECMO she would go fast. Danny, my mom and our amazing transplant coordinator sat with me as I held Addi in my arms. We prayed, thanked the Lord for the time he did provide and we said our "See you laters." They extubated and turned off the machines. Addison squeezed my hand and then I literally felt her soul leave. If you have experienced this, you understand what I am saying. I literally felt her leave. I can't explain it. My soul felt my daughters soul leave. I could see it and feel it. It was heavy, peaceful, full of grace yet the worst feeling I have ever felt in my life. It felt like only minutes until they took her body out of my arms, I was later told It was actually many hours.
The days after that are a blurr. I remember my parents, brother and Lacey packing up RMH. I couldn't be more thankful. My amazing parents who not only love me but love Danny as their own. Danny throwing stuff in wagons, my dad and brother shoving stuff in the car. I remember leaving RMH in the cold, I forgot to wear shoes. My mind was gone. The drive home was long. We stopped at Dillards to get Savannah a dress to wear for the funeral, so we didn't have to face people at the local mall. Savannah wet her pants in the middle of looking at a dress. Pure shock, she looked up at me hysterical crying "I didn't know I had to go." Grief and shock was setting in for all of us. I don't remember the funeral, I don't remember who was there, I don't remember seeing friends, family, teachers. I know now by what I have been told but at the time it was a blurr.
After re-capping the events from September 11th-October 15th with Children's, the autopsy results were a very harsh reminder Addison really is gone. After 14 days of having a "perfect" transplant with a "perfect" match, the autopsy revealed Addison had Grade 4 cellular rejection as well as PRA rejection. A rejection so fast and so strong her coronary arteries were large and inflamed. Causing a large clot in her left ventricle and also found were numerous small clots throughout her entire heart. There was nothing missed, nothing left to do, no other medication could have been given to prevent a rejection like this.
Now what? Our family continues to grieve the loss of our most precious gift and continue with the day to day reality that Addi is gone. At this point I am burying myself in the hope of God, the gym and spending many hours at Savannah's school. Savannah has experienced more loss in the last year than I ever imagined and right now its time to build this little girl up into the happy and intelligent child she is. She is very spiritual and has experienced moments with Addison and God that only the innocent eyes of a child would experience. Savannah reminds me that Addison doesn't have a scar anymore and Addi sits with Jesus. Savannah is very in-tune with her emotions and she is processing very well. We all continue with our support groups at hospice and Savannah continues with gymnastics and swimming. Her school has been not only an amazing support to Savannah but an amazing support to Danny and I. I couldn't ask for a better school full of teachers and staff who truly love Savannah. It is amazing to walk into a large school full of children, yet every teacher knows Savannah's name. She continues to get comments on her high level of thinking, energy and happy well adjusted spirit. She gives me hope knowing there isn't any other way to go but forward.
Danny and I want to thank everyone for the love and support we have received. Truly, thank you.

What an amazing strong women Angela is and my heart aches for her and her family especially during this holiday season.  My heart also aches for the families who lost their children in the latest school shooting.  God welcomed too many angels too soon lately.  I know they are in a better place, but as a parent, I understand that WE WANT our babies HERE with us.