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.