[Discussion Board] [Sign Guest Book] [View Guest Book]
[True Links] [Library] [Calendar] [True Stories] [Home]
Torrey, almost 8, with he brother Daniel
She received the Gift of Life October 30, 1997
Writing Torrey's story could take pages and pages or just three words: Conqueror through Faith. Torrey's full name, Victoria Faith, means just that.
Born November 19, 1993, my second child born with Citrullinemia. We didn't know it at the time but Torrey was afflicted by the same disease that killed her brother Braden just two years earlier. The amnio we did for early diagnosis, showed no trace of the disease and we were elated to finally be bringing a healthy baby into the world! Back up tests were done at birth just confirm the clean bill of health, but by the third day of Torrey's life we hadn't gotten the results. I just knew my little Faith Victory was healthy and fine but because they put her (and me) through the pain of those tests, I wanted the results.
"Hello, this is Kimberly Thomas," I said to the Lab Monday morning, "I'm calling for the results of Torrey's tests."
"We don't have any results, we never got the specimens."
"Yes, you did, they were delivered by courier on Saturday at 2:00 PM, this is a matter of life and death you need to find them."
They found the samples unlabeled in the back of the freezer. Assuming they were Torrey's the samples were processed.
Three hours later, the phone rang:
" Torrey has Citrullinemia, you need to get her into the ICU immediately."
Shock! Fear! Denial! Anger!
"NOOO!" I screamed as I tore my new baby from her grandmother's arms. "I lost your brother, I'm not losing you too!"
I barely remember the car-ride to the ICU. At least I wasn't performing mouth to mouth on Torrey to keep her breathing as I had done for Braden on his ill-fated ride to the hospital. The fear and memories of Braden never returning from the hospital haunted me. Still I refused to believe this horror, I would not acknowledge it until I saw the first ammonia level. There must have been a mistake!
The "stat" lab work came back just an hour later revealing an ammonia level of 238. It wasn't below 60 like I hoped I'd hear. NO! I just knew she was going to die. The usual medications were hooked up and the "fragrance" was a déjà vu to when Braden was in the hospital. Though the odor was not pleasant, I did like the association to Braden.
The first day in the hospital was a blur.
"If she's gonna die, she's gonna die. We're doing everything we can for her." We overheard doctors talking outside of Torrey's room. They had seen an OTC child in a very high hyperammonemic crisis just a few weeks prior to Torrey's arrival. That child died just two days after being admitted.
I gave up all hope. I just knew she would die. All I knew of Citrullinemia, was that it killed Braden. Why would Torrey be different? Our pastor's wife, Janie admonished me, "Kimberly, you do not give on this baby. She is NOT Braden. You fight for her, with everything you have."
It was just the kick in the pants I needed. That day I began praying for a complete healing for Torrey by kindergarten. Every night as I put her to bed I begged God to form a protective barrier around Torrey's brain to protect it against damage from the toxins in her system and to allow Torrey to start kindergarten age appropriately, completely healed of Citrullinemia.
The next few days were not easy but uneventful. Torrey was off protein, on the medications and her ammonia level was soon normal. Then came the daunting task of regulating her diet. She would have to be on a low protein, high calorie formula forever. Each day it had to carefully calculated and measured according to her body weight. I wanted her formula to be breastmilk based. Doctors had never tried that before and were reluctant, though soon gave in to my persistence and determination in arguing that it was the best thing for my baby.
After a week in the ICU Torrey was released. I was pumping my breastmilk 6 times per day to make her formula and we were on a strict feeding schedule! My kitchen was converted into a lab with beakers, a gram scale, various white powders and smelly medicines. The most stressful part was that as a baby she had virtually no appetite. Getting the required amount of formula and medications in her was an unenviable task! Many times Torrey was just plain not interested in eating. We'd try to get the midnight feeding in her, and if not, we'd get up again at 1:00 and 2:00 if necessary and so on, only to start all over again for the 4 am feeding.
On top of that, Torrey had to be monitored for any signs of irritability, lethargy, or anything outside of the norm. Each time we saw any kind of different behavior, she was rushed in for blood work to determine if her ammonia level was elevated. There were many false alarms, but also many hospitalizations. It was a full time vigil. With each blood draw came a different lab tech who had to be educated on how to draw an ammonia level , putting it immediately on ice and making sure it didn't sit in the lab. With each hospitalization, we were told Torrey would not reach the developmental milestones most kids did and that we should not have high expectations. We would be lucky if she lived a year.
Despite all silent that, Torrey, my little conqueror, crawled at 5 months, walked at 11 months and was a scrappy, fun-loving little girl.
At about 1 year old we started using an NG tube to aid in getting the proper volume of formula in her each day. We always let her eat her fill and then tube fed the rest. She started eating cereal Trix. I felt crazy and irresponsible when I came home from the store with Trix for my baby. Most babies were eating Cheerios, but Torrey got Trix they were the lowest in protein and highest in calories I could find on the store shelf.
Happy meals consisted of French Fries only. No hamburgers! Most kids would have been thrilled!
High ammonia hospitalizations plagued us. From the time Torrey was 9 months old to the time she was 14 or 15 months old, we didn't spend a week-end at home. She even spent her first birthday in the hospital. As a matter of fact, Torrey would not get to spend a "real" birthday out of the hospital until she turned 5!
Despite the hospitalizations , we had a HUGE party to celebrate the milestone 1 year of life. All our friends came. Everyone video taped messages of hope to Torrey speaking to her into the tape as if she were 16 watching the video in hindsight. Everyone shared their hopes, dreams, and prayers for Torrey and her future; those who were unable to attend the party sent in their thoughts and prayers on cards for our miracle baby!
The next year was tough. There were many hospitalizations and getting veins for IVs and blood draws became increasingly more difficult. Often it would take four hours of poking collapsing veins to get that IV in place and get that brain cell saving, life saving medication into her battered body. Often an IV would only last a couple of days at best. With each needle poke and collapsed vein, I would panic further knowing in my mind that for every second she was not getting the medications, more brain cells were being killed. I prayed my heart out for easy blood draws and IV's on the first stick. "Please God, I'm not asking anything hard today, like a total healing for Torrey, just please don't let her suffering be worse than it has to be!"
We took all the milestone photos 3 months, 6 months, 9 months, 1 year and then 18 months. In each photo Torrey's big eyes sparkled. The two year old picture was different. Torrey's eyes had lost their luster! At about 18 months Torrey stopped reaching the developmental milestones and she was not speaking even one word.
We went through the early intervention programs. All therapies were recommended: Speech, Physical, and Occupational. Torrey started to learn sign language; it was wonderful to begin to communicate with Torrey, but progress was slow and dragged out even more by our absences due to so many hospitalizations. The NG tube was causing major problems. Not to mention I hated wrapping Torrey in a blanket like a mummy, laying on her and attempting to insert it in her nose and down her throat. I could barely do it without gagging myself and would often end up crying. There were many occasions when I would just get it in place and taped to her face and Torrey would yank it out and I'd have to put it back in sometimes up to 3-4 times per day. However awful, the feeding tube was an integral part of just surviving the day. We were now on a night feeding pump. The theory behind the continuous feed was that it was better to deliver small amounts of protein over time to give her body more time to process it.
Good news came just before Torrey turned two. We were moving from San Diego to Chicago and there would be another baby, a boy. Early tests showed that he would be free of the disease. I was skeptical but hopeful that I would finally have a healthy child.
Every night after I fed Torrey's new HEALTHY brother Daniel, I would give Torrey a dose of Reglan and pray that she would make it through the night without throwing up at 5:00 AM. However most mornings, we were up at the crack of dawn changing Torrey's sheets and pajamas. The odor of the medications and formula was enough to make anyone sick.
Life went on and we had some desperately high ammonia levels. We never in life got above 400 but had episodes where Torrey was in a coma and on a ventilator for several days. During those times my mind would always flash back to Braden. Once he was on the vent, all I could do was lean over his bed stroking his hair telling him how much I loved him and how much I wanted him to come back to me. I did the same for Torrey. The vigil was constant, all the while praying my heart out that God would form a protective barrier around her brain and protect it so she would awaken and still be my Torrey.
The length of hospitalizations started growing from the usual 2-3 days to 2-3 weeks to 2 months. It seemed summers were the worst. Torrey just didn't tolerate any heat!
The IV's really became an issue. We just couldn't get any more lines in those over used veins
Finally we opted for a g-tube and a port a cath. Both were God sends. I was so reticent to alter her body with something permanent like those two devices, but they were SO much more humane than the other failed methods. I truly wish we would have done both early on.
Today, I can barely remember how many hospitalizations or ammonia levels. It got to the point where we were spending more time in the hospital than at home. The stress it created was unbearable yet we didn't know it. The victories were few and far between, but always celebrated! Torrey spoke her first word "Elmo" right about Easter time of 1997. She was 3 _. We were thrilled and hoped it would break the silence we had grown used to. Despite therapies and constantly working with her, Torrey remained trapped in a world of medications, feeding tubes, IV's and hospitals. I longed to hear her say "mommy" but "Elmo" was progress. Over the course of the next few months, a few more words emerged, but we still had no idea how to unlock the little girl held hostage inside the walls of Citrullinemia.
During the summer of 1997, things grew worse for Torrey and we couldn't keep her stable despite hourly tube feedings filled with medications during the day and a continuous feed pump at night. And of course the throwing up was indescribable. Life flight helicopter and ambulance rides were becoming part of our regular routine
Finally in August of 1997, Torrey was 3 _, our metabolic specialist in Chicago Dr. Barbara Burton, cleared her schedule and came to us in the 7th or 8th week of a grueling hospitalization. That day, Dr. Burton who was always upbeat, had a very somber air about her and I could see the concern she had for Torrey and our family. She reviewed the course of events leading to that day. Even on the IV medications, Torrey's body was not tolerating the amount of protein her body needed to just keep it alive. We were headed for danger quickly, and there were no guarantees that we would be able to stabilize her as her body continued to fight against itself.
Not the words we wanted to hear. Dr. Burton gently pointed out that we owed it to Torrey to weigh all options for her including a liver transplant.
Our prior knowledge of transplants was that 80% of transplant patients died - these were the statistics we had been quoted when Braden was in the hospital many years earlier.
We did our research and found out that the most successful pediatric liver transplant program was in our own backyard the University of Chicago, made an appointment and went over and met their transplant team. No decision yet, just fact finding. We found doctors much like our Dr. Burton and soon grew as attached to them as we had to Dr. Burton. They took the time to answer all our questions without quoting "fluffy" numbers or pressuring us to make a decision.
The next few weeks were the toughest I can remember. Miraculously, Torrey stabilized and was able to finally leave the hospital. Things seemed fine, though I knew at any given moment Torrey's ammonia level could sky rocket out of control for no apparent reason. But nonetheless it was familiar and however strange it was to others, it was comforting to me to have Torrey home and "stable."
Many prayers and thoughts went into the decision: we opted for transplant. Of the choices available at that time, it offered Torrey the best chance at having a normal life - SOME DAY. There would be so much to overcome once she was healthy. And there was the impending question that no one could answer. How much damage had all the hyper ammonemic episodes caused to her brain?
We were referred to the Make A Wish Foundation. They sent our entire family to Disney World for a trip. It was an attempt to create lasting and beautiful memories with Torrey should something go wrong. Despite a couple of tiny emergency room trips for ammonia levels, the trip was amazing. More than we could ever have dreamed. We returned home on October 5th. Torrey went active on the transplant list on October 6th.
I knew the statistics 15 people die every day waiting for transplants. I bunkered down for a long wait and even tried to put it out of my mind. The hourly tube feedings and nightly sheet changing ritual continued status quo but Torrey was stable.
The call came just 23 days later at 9:15 PM. They had a liver for Torrey. It was a 4 year old child's liver. My heart was pulled in so many directions: stricken with terror over what we were about to embark on, grief for the family who's child died so mine could have a chance at life, and incredible love for Torrey. I didn't want to let her out of my arms! I called the first name on the prayer chain I had set up. Once it became active, literally hundreds of people would be praying for Torrey. I would call them many times with updates. We drove to the hospital making a brief stop at our church. Betty, an elder anointed Torrey with oil and prayed sweetly and faithfully over her. We arrived at the hospital just after midnight, checked in and began preparing for transplant. Our precious neighbors came to the hospital and kept vigil with us through the night and into the next day.
At 6 AM I walked Torrey into the pre-op room. The anesthesiologist allowed us to remain with Torrey until he put her under the sedation. Once she was sleeping I kissed her forehead, told her I loved her more than imaginable and turned to walk out of the room. The doctor stopped me and handed me "pinky," the bunny Torrey had been holding up to this point. I took Pinky outside with me and she became my comfort for the entire day.
We sat in the surgical waiting room and many friends joined us. It was overwhelming to see the friends who seemed to come out of the woodwork just to be with us. We got little updates from the OR. With each big step, the surgeons called and told us of their progress. Removing Torrey's liver had gone extremely well and they were beginning the task of attaching the new liver. A small victory, but a victory was a victory! I called the first name on the prayer chain and passed the news and asked people to pray for the next step. Torrey was in the OR somewhere in the hospital, but definitely not alone. She was surrounded by millions of prayers every step of the way!
The next few hours seemed to take forever. We began growing tired from lack of sleep the night before, but still I sat at the edge of my seat, clutching pinky tightly, waiting for news, any news. Finally, just after 1 PM or so we heard that the new liver was in and all was good. They were starting to close. All had gone as well as can be expected!
We went to the recovery area in the ICU and waited for them to bring Torrey. Nothing could have prepared me for what I saw when she entered. Torrey was huge from the fluids they had given her during the transplant. She looked like a purple sumo wrestler. It scared me Braden's kidney's had failed several hours prior to his death and his tiny new born body blew up like a sumo wrestler, "please God don't allow that to happen to Torrey too!
Torrey was on a ventilator. I stroked her hair reunited her with Pinky and whispered in her ear, "You made it baby. You did a great job. Rest now and we'll talk to you in the morning." We sat by her bed well into the evening and then fatigue got the best of us. We turned in around 8:00 Pm and couldn't wait to get back to the hospital the next day, Halloween.
On that haunted day, kids all over the hospital were dressed as doctors and enjoyed the candy and treats that were so forthcoming. Torrey slept. She was in a lot of pain and heavily medicated, slowly she began wake up. As she started coming to, she began to get combative so they had to re -sedate her. I'd have to wait another day to see her beautiful big brown eyes. It was just a minor setback.
The next day she did wake up and the vent was removed. The swelling was going down though she was still puffy, but she was definitely Torrey. And imagine our surprise when she started speaking: Sentences! Simple sentences, but sentences! How could that be? It was true and awesome. All the words, all the books read to her, all the efforts to make a connection with her were successful. She was in there. Once she was released from Citrullinemia and all the toxins, she was in there!!! That was the first in a series of miracles. The next week breezed by with NO complications. The doctors warned us that this was the "honeymoon period" and there could still be complications. Still we didn't worry. Each day was so special as we finally got to know our little girl. Friends came and brought Torrey gifts. Our room was filling up fast and began to look like a toy store. It was amazing.
The first toys that Torrey latched on to were Matchbox cars. She loved them. Prior to transplant, Torrey's attention span was so short that she never really played with toys. She would flit from thing to thing, maybe moving it in the process, but I never saw her actually sit and play with an item. Now she was playing and CONCENTRATING!
Life was good. We felt so lucky and blessed.
Our "honeymoon" was short lived. Rejection settled in and we were switched from Cyclosporine to Prograf. No one was worried, they expected a few bumps in the road. A few more days passed, Torrey spiked a fever and the rejection was becoming more serious. We endured a biopsy confirming the rejection. The fever remained, Torrey wasn't eating anything and she was in obvious pain. My spirited baby grew lifeless, colorless, and limp. She just lay in her bed and moaned. Day after day passed and we could see the doctors who were usually up beat and chipper around Torrey growing concerned.
A few more biopsies followed. None showing good news. We had to insert an NG tube to get some nourishment in Torrey as her g-tube and port had been removed during the surgery and she had no interest in eating. Torrey's lungs began filling with fluid and she began to have difficulty breathing. Now she was hooked up to oxygen, the fever remained and her lungs filled quickly. Torrey's breathing was extremely labored. It was time to drain the fluid. A chest tube was inserted through a small incision in her rib cage and then threaded between her ribs and directly into the lungs. I couldn't believe the amount of clear fluid that drained out her tiny chest cavity. No wonder she was having a hard time breathing.
I'm told by adults who've had them that chest tubes are extremely painful. Torrey endured it as always bravely! She was in a lot of pain. As time went on I felt her giving up. The doctors concern grew each day. Torrey lay limp in her bed. After 10 days in the downward spiral, things were getting desperate. The rejection continued, her lungs were continuously draining and Torrey lay depressed and still; every once in a while managing a whimper. She no longer wanted to be touched; she ached so badly. Torrey even told us not to sit on her bed because it hurt her when we moved her mattress. I could see it in all the faces around us. We needed a turn around and quickly! It was Friday, November 14.
3:30 PM. My friend Mary called. I was sobbing. It was the first time I acknowledged the fear of losing Torrey. She had given up and I felt helpless. Mary shared my tears but before she hung up she said, "I'm hanging up to get on my knees before God for you right now." I wanted to hope, but was afraid. God hadn't healed Braden, why would he heal Torrey?
We got off the phone and I stared helplessly at Torrey lying on her bed, moaning in pain. As I stared at the orange walls of the small room, I suddenly felt trapped and enclosed. I had to get out of there and so did Torrey. What possessed me to do it I do not know, but despite the pain Torrey was in, I gently picked her up and placed her in a wheel chair, "Come on baby, you need a change of scenery."
Torrey sat limp in the chair, afraid to move, the pain must have been awful. We started to walk the halls slowly. It was the first time Torrey had been outside of that orange room in almost 10 days. That's when the miracle happened right in front of my eyes. Almost as if in that moment God reached down and touched Torrey right in front of my eyes. The hospital was set up in a big rectangle with openings in the middle for nurse's stations and treatment rooms. One of our doctors was in the exact middle talking on the phone. When we emerged from Torrey's room Dr. Brady just looked at us and I could see the concern in her eyes. With each lap around that rectangle Torrey sat a bit more erect and her face was beginning to gain some color. By about lap 5, Torrey was smiling, and then lap 6 laughing and singing songs with me. What was happening was noticed by all in the nurse's station. I was afraid to stop walking something was working! Tears of joy welled up in my eyes.
Dr. Brady came over to us and commented on the transformation of her patient and then another miracle Torrey had smelled her dinner tray delivered as usual at 5:00 PM. She was hungry and wanted to eat. We stopped in the hallway, and Torrey ate her dinner. I could hardly believe my eyes.
I ran back in the room to call Mary to tell her of the transformation in Torrey. We cried together as I shared the good news. It was then that Mary told me that all our friends had designated that day to fast and pray for Torrey. God had heard and answered their prayers.
Since that day we have never looked back!
We have had no complications. The next few days, Torrey was able to go to the playroom in the hospital and she just grew better and stronger with each day.
Torrey was discharged from the hospital on November 19, 1997. Her 4th birthday. It was truly a "birth" day! We celebrated like we never have before. Torrey dressed as Minnie Mouse her favorite character from her trip. It was so special to finally know our little girl.
The days that followed were all healthy though the remnants of Citrullinemia still haunted us in some aspects. All of Torrey's protein deficient hair fell out and began to regrow And the biggest challenge, Torrey had to learn to eat and take her pills orally.
It took time, but we mastered those tasks and now Torrey eats more that I do. She was weaned of the prednisone by six months after transplant and at that moment, her growth skyrocketed.
Now a tall slender beautiful girl with shoulder length healthy blonde hair, Torrey takes only 2 prograf in the morning and 3 at night.
In August, 1998, the culmination of my dream came true. Torrey then age 5, dressed in a beautiful yellow dress carried pink roses for her kindergarten teacher. As she boarded the bus tears streamed from my face Today was the answer to my prayer. Torrey was completely healed and healthy!
Developmentally, Torrey is catching up at an exponential rate! At the completion of Kindergarten, Torrey's tests indicated that she was close to 3 years behind kids of her age. Torrey is just about to start Second Grade and the latest tests put her only one year behind on the scale and we're still closing the gap!. Today, Torrey enjoys reading, biking, horseback riding, swimming, and her American Girl doll, Felicity. She has grown into a beautiful little lady.
Just yesterday we had a discussion: Torrey was concerned that when she gets older and wears a bikini, people will see the scar on her tummy. My response, "Torrey that is not just any scar, that is where God physically touched your life and healed you. It is a mark of beauty. Anyone one who knows you knows that!"
I'm smiling thinking over that response. How life has changed. 4 years ago, 6 hours without medication could have snuffed out Torrey's life, now we have the luxury or worrying about a scar.
This November 19th, Torrey will mark another huge milestone. Her eighth birthday she will have been healthy longer than she was sick. Yet another victory for my Conqueror! May many more follow!
Torrey's Mom
Kimberly