Page 11 The FINALE

Savanah Ray has been successfully transplanted with a left lobe of an adult liver. The surgery went well. The surgeons are truly Wizards at what they do. Not leaving out the ones who kept her alive while the surgery was in progress. Everything is moving as expected and we are so thankful to god and everyone who has prayed for her. I know we traded one for the other , but she has a better chance now. I love you all. Thank you for reading our story yet it is not over but just beginning. Maybe look for my book in the next couple years.

Page 10 The Wait

We got here at 9:30pm. We waited patiently through the night for an update. Well then morning came and the surgeon came into tell us that he was leaving at 9:30am to go and harvest the donor liver. This is long and stressful. So many thoughts are running through our heads. Were staying as positive as we can be as my Aunt Linda would tell you. Today I'm grateful for everything and everybody. Now more than ever. Because of this experience I've learned how critical it is to be a donor. To save someone elses life is truely salvation in it's own. I think everyone should donate. For some unfortunate event you maybe able to save lots of lives because one was taken. My daughter is saved because of someone's kindness to humanity. She will be able to grow up and live a little more normal of a life. No more worries about her ammonia rising and her having more brain damage. Around 2pm our surgeons were in the room ready to take her to OR. I was very nervous and scared for her. We all went to send her off. Gram, dad, and myself all kissed her goodbye and wished her good luck. I prayed for her and for all who are kept here for one reason or another.

Page 9 The Call

We were on our way home tonite from the hospital and half way there, we got a phone call. It was the transplant surgeon!!!!!! He said "We have a liver and this will be done tonite"!!! Were all scared, happy, and hopful. For all who read this tonite. Please say a pray for Savanah Ray Franks! She deserves it ladies and gentlemen. She has a great team of dr's, surgeons, and nurses BRING IT ON!!!!!!!!!!!!!!! I'm sick of this horrible disease that is consuming my precious little girl. I think me and dad were kinda in disbelief until we seen it all start.

Page 8 Break through

Today we learned that she did well on the dialysis over night and her ammonia is hovering around the 50's. She won't have the vas cath taken out and the dialysis is on stand by, but weve made a break through. For days she has not been able to stablize the ammonia herslf. We learned that Savanah's body was starving. Her calories had been cut because of her weight and she was at a max. I can honestly say since they did that, now thinking back her body started to go haywire. her body needs as of now 100 calories an hour to maintain.

Page 7 Hoping sooner than Expected

What we thought was gonna be 24- 48 hours turned into a month. We had to get a Med port insert. shes so chunky because of her supplements it's hard to gain access quickly. Then she started this wretching and gagging we knew something was going on. Next thing we know were going down to get a vas cath again for hemodialysis. So here we are again. Waiting patiently for a transplant and praying for those who have to donate it. It's hard to pray for something that's gonna hurt someone else deeply. But we stand tall everyday at her bedside reminding her of how much we love her and are mighty proud of her bravery. We have been on dialysis for four days now. She's on the vent so that there is no problems while dialysis is running. When we came down that morning I was so scared. when we go in we talk to her sometimes it's to much stimulation so we have to either give her a minute or we just don't talk.

Page 6 The Homcoming and Admission

Savanah was there from 12/06/09 - 03/29/10. That day was priceless she was coming home. Anything that went wrong went Wrong. But we made it home. Family was here to indulge in the moment that this little champion fighter is here. She slept through the night because she had a G-tube. I got up every four hours to dump more formula in and check her sugar and her butt. We had such a nice time in the morning laying on my bed with me. She always peed on Jay's side of the bed. We had to go to the pediatrician the next day, big brother wa shere to help. Spring break was timed perfect. Then the next day we had to go get labs done. then the next couple days were ours to relax. She turned 4 months in Easter Sunday. We had a great day. Gramma Snowy got to see her and that was important. Then on the 7th we went for labs and they were good. They adjusted her formula and we had a great time together. then on the 14th we went for labs and I got a phone call saying to come back the next day for a recheck. I was displeased but at the same time there were no warning signs. On the 15th we were admitted. The ammonia just increased all night long. She was finally put on IV and she started to look very tired. We found out the ammonia was 257. She only shows signs when it's high.

Page 5 The Punch to the Gut

Most of us who didn't have to work or called off stayed over the hospital in the waiting room. Me and my husband slept against the glass in the playroom. When we woke up my aunt linda was sitting there talking with my aunt denise. My poor mom left after 2 in the morning and went to work. We got our new badges for the day and went in to see sparkles. Her color was better, her ammonia was coming down. We met with the genetics team and learned of what this is. They had to wait for DNA but they were certain of the disease. Of course it was the worst one. CPS type-1. We were told anything past 12 months without a transplant is grave for these kids. Wow the transplant was so shocking. She needed a liver. On this day Dec. 7th we were introduced to SCAVENGERS. This army of IV enzymes eat the ammonia like pacman does to the blue ghosts. Savanah was on a no touch no talk rule so for many days we sat at her bedside just staring at her. These scvengers smell like pee. The smell was so strong that as soon as you came around the bend you could smell her room in the hallway.It was around Savanah had some issues and events along the way. But we bounced back. She was so greatly taken care of. As she got older she would take stroller rides through the unit. She would hang out with the gals at the nurses station. She loved Mary Poppins. Thanks to many kind nurses., my daughter is alert and the brain damage is minimal. These nurses are god's soldiers on the NICU. You couldn't find a better bunch of individuals.

page 4 Were not ready

Sadly that only lasted for a little while. Next a little powerhouse of a woman swung out of the doors and called out "Franks Family", my heart stopped. Jay had gone out to smoke, so I just went with her. My uncle went to get Jay. she took me back to this little room that looked like a room you would have time out in if you were a child. She sat there waiting only moments then I asked what was going on. She said ok your daughter just had cardiac aresst and pulmonary failure. My heart stopped I thought she was gonna say something I dreaded to hear. Jay came in and we broke it to him. He cried out hard. not that I didn't, but I never felt my dad loved me , and to see a strong man cry out for his daughter it was so much more intense. We were told that her body at one time can only take so much and we might be called upon for a decision to be made. She reassured us that they will not give up and they will fight until shes notes otherwise. My world fell apart. I crumbled to the ground like jello outside the doors when i seen my uncle standing there I just wanted someone to make this all better and have it go away. We went to the chapel. i was mad. Why is this happening, what is happening,why are you taking her away from us? I cried out my piece of mind. My aunt gin and miranda came to me consoling me and trying to reason with me. You are not alone is what they said and were not going anywhere. At that moment I felt she deserved this family as much as we deserved her.

Page 3 Run Hun Run

When we arrived her doctors were coming around the doors running in through the ER. We sat in a room waiting for someone to come see us.Finally an on call caseworker came out gave us a code for her and explained something to us. As long as she wasn't discussing Savanah i couldn't here her. The two tall gentlemen in long white coats and surgical hats appeared. I stood right up even before they said our name. They needed consent for a vas cath to start HEMODIALYSIS. I was in a world of confusion. My head was spinning. Not a moment went by without thought. A nurse named Karen came out to let us go see her. She explained what was happening to savanah with the dialysis. I felt like crumbling when I finally got to see her again. Her little body was vibrating from the breathing machine. She had an immense amount of IV's. I've only seen that in movies. Then we had to leave the room again.
My husband and I just had a beautiful baby girl. My son , a sister. Now were praying that she stays with us. We went to the chapel and prayed. Then my husband disappeared for a while, later I find he went to seek salvation. My husband comes around the bend with a man that looked like the guy from the movie the GREEN MILE. This man towered over all of us. Even my uncle Herb. He said he was a pastor and would like to say a prayer for Savanah with all of us gathered at the bedside. He put his hand over her head as my mom, my son, my husband,myself, miranda, uncle herb, and aunt Ginny all held hands and said the Our Father. When he looked at savanah who was heavily sedated and sleeping, I swear he waas looking into her soul. A calming feeling came over the room. He was talking to her and I couldn't quite hear what he was saying, but after he would say something to her there was a brief pause after and he would respond with more talking or laughter. I felt stronger as the chills ran haywire on my skin. I was ready for Battle .

Page 2 Spinning out of Control

After I told them another Dr. walked in. He announced himself with a strained stare. He began to tell us that our daughter was failing fast and they don't exactly understand why. He informed us that Savanah has had a seizure. He said that for her to have any chance she needed to be transported to children's. We quickly agreed. We were to go to the NICU when they called for us. They called quicker than supposed to. We went running through the hospital in search of NICU. When we entered it was very quiet. Savanah was spread out on a little table her arms out wide. Her eyes were shut, at first I had to see the look in the nurses eyes before I touched her, because of her purple colored skin I had wondered for a split second, "Is she alive". I looked her over, touched her, told her I loved her, then cried out to Jays father who has passed to watch for her if this turns bad then I kissed her as good as I could. There were wires connected to her with monitors. I asked what we were waiting for? They wanted to know if we would like her Baptisized before transit. The possilitity of her passing was now a reality. We went racing to my room to gather all our things. We raced to the car and we were off to Children's.

Page 1 The News

This is Savanah Franks. She has a Urea Cycle Defect called Carbmoylphosphate Synthase type -1. Savanah was showed severe symptoms this disease yet no one new exactly what was going on. She was born on a Friday and was rushed to children's by Sunday afternoon. Friday I couldn't get her to eat. Friday night she Projectile vomitted all night long. Saturday she was so sleepy and not the little who was ok for the first few hours. Saturday night she had a drop in body temperature. I'll never forget opening my eyes and seeing a woman standing over Savanah just staring. A chill came across my body. I asked what was wrong? She said " I just don't like the way she's breathing". All the things I had noticed over these two days now were turning into red flags. She was taken to the NICU for closer observation and possible treatment. I sat on the bed and cried. I called my husband and told him. He told me don't worry it will be ok. I stayed up pacing. A woman came in my room and announced herself as one of the NICU doctors. She had a soft spoken voice and a sigh on her face. She told me that Savanh was very ill and they weren't sure what was going on. She told me to have my nurse call the NICU in about an hour. Next my husband and miranda walked in the room. I informed them of the situation at hand.

Our Journey to Transplant

People say isn't the thought of a transplant scary? I always answer "No". What's scary is the thought of her having less of a chance of turning five without it. She has come along way and I praise her for her strength and her will to live. I want everyone to know that with tragedy there's faith and hope. Don't give up on any fight that your child is battleing! You will find strength when you are at your weakest, because it's your Child.