God's Gift

March 16, 2010 Logan, Kellie, and Tyce Whitis received a gift from God! Trell Bradley Whitis was born. The previous nine months had been full of lots of ups and downs. Trell’s parents had visited many different doctors and had been told many different things.
Knowing that God was in control, they never accepted the bad news that they were given. From day one that Kellie found out she was pregnant she had to fight for the strength to continue to be positive.
When Trell was born, he was so beautiful!! His big eyes were open and he was looking around checking things out. We were so excited and proud! He looked perfect!! Trell’s big brother Tyce was excited the most. He made sure everyone knew that he had a new little brother. There was no way Trell was getting out of Tyce’s sight. Tyce and I followed the nurse to the nursery to watch the nurses clean and weigh Trell. Shortly after Trell’s bath he appeared to go to sleep. Not only did he sleep through being weighed, but he also slept through his first shots.
Shortly the nurses reunited Trell with his family. We had told Kellie about his beautiful eyes and about him looking around at all of us. Unfortunately Kellie had become sick and was not able to see Trell’s eyes when he was first born and now he was sleeping.
After several hours of celebrating the birth of their second son, Kellie and Logan became concerned because several attempts to feed Trell had failed. There had not been any need for a diaper change up to this point. Nurses assured Mom and Dad that everything was ok. Trell would eat when he got hungry.
After staying the required amount of time, the Whitis family was taking their newborn son home. Arriving home very late, family and friends were waiting at the Whitis home to celebrate!!
Seventy two hours old and still Trell had not eaten or wet his diaper. Kellie and Logan knew in their hearts something was wrong with Trell. He had more severe problems than just being a “lethargic” baby. They decided it was time to do something for their son.
They returned to the emergency room less than twenty four hours after leaving to take Trell home for the first time. Doctors quickly discovered that Trell had some major issues. Several tests were completed to try and determine what needed to be done. Despite Trell sleeping through a spinal tap, and low body temperature doctors were still saying that he was ok, and when his body temperature returned to normal he would wake up.
After several hours nothing changed. His body temperature was still in the eighties. Trell’s doctors decided to call Kentucky Children’s Hospital in Lexington KY. Doctors at UK immediately sent a special ambulance to get Trell.
When Paramedics arrived everyone was asked to leave the room. We could tell by their actions that Trell was in trouble. Trell’s oxygen level was 4 and he was cold to touch.
Within forty-five minutes Trell was at UK. He was admitted to the PICU and on life support! Basically we had lost our little angel at this time. Doctors met with Kellie and Logan and told them that they did not think Trell would live through the night! With family and friends by their side the Whitis family was facing a long difficult night. So many mixed emotions and a numb feeling not knowing or understanding why this was happening to us or what God had planned for us left all of us with a huge feeling of hopelessness.
In a short time a team of doctors met with Kellie and Logan again. After performing several test it was determined that Trell had a metabolic disorder called Nonketotic Hyperglycinemia (NKH).
Kellie and Logan entered the waiting room, where we were all waiting to find out what was happening. With sadness in their eyes and a heavy heart, they informed us what the doctors had told them.
What is NKH, what medicines will heal this disorder? After several questions and lots of tears, we were told that there was no cure, and there is nothing we can do except pray. Most babies born with NKH live for only hours and the ones who live longer are usually mentally challenged and have uncontrollable seizures along with low muscle tone.
Across the hall and through double doors, there was a precious little red headed baby lying helpless and depending on a ventilator to breathe. With tubes, wires and machines beeping loudly was an innocent little boy that did not deserve to be going through this.
Kellie and Logan stayed by Trell’s bedside day and night. They were not only worrying about Trell, but they were also concerned about Tyce being two hours away. He was two and had no idea what was going on. Tyce missed his mommy and daddy, but he knew something was wrong with his little brother.
Days became long and the nights were even longer, and Trell was not improving much, even though we knew God was hearing so many prayers for Trell. The doctors and nurses were so good not only to Trell but to all of us. On the inside of the double doors was a team of doctors figuring out their next move, and on the outside was a team of prayer warriors refusing to give up.
Trell’s parents had to make some decisions on what would be best for Trell, knowing they did not want Trell to be on life support forever, but they were not ready to give up either. They decided to wait two weeks before having to make the decision to unplug the ventilator.
Kellie and Logan were allowed to help with Trell’s bath and diaper changes. With every little movement of his little fingers or toes, there was a celebration. One night he yawned and you would have thought he had taken a step. We were so excited, because remember he had been in a coma since shortly after birth.
Trell was such a fighter; he showed some kind of improvement everyday. Doctors continued to caution us that most babies do not survive this long, and they were not sure how Trell was improving. A doctor told Kellie and Logan that Trell would never come off the vent and he would not survive much longer. He remained in a coma.
With two weeks quickly approaching, doctors decided to try and turn down the vent and see if Trell could breathe on his own. Sadly, that attempt failed. Kellie and Logan never gave up. They knew Trell was not born with red hair for no reason, and his stubbornness would be an asset.
Two days later doctors attempted the same procedure as before. This time things were looking better. Finally, the doctor informed Trell’s family that he was breathing 30% on his own. Before the doctor’s shift ended, Trell was breathing 100% on his own. Tubes were removed but Trell remained on oxygen. There was a feeding tube placed in his little nose. Still Kellie and Logan were told not to get too excited because things could change for the worse. After a long night and no set backs, nurses decided that Trell did not need oxygen full time. That was one more tube removed.
Doctors could not believe what they were seeing. This was not supposed to happen. Two weeks ago, doctors were ready to give up on this little miracle. Look at him now: he is no longer in a coma, he is breathing on his own; he is even trying to drink from a bottle. Soon Trell was out of PICU and in a regular room.
The next few days were very hectic for the Whitis family. It was a whole new world and new way of life. Learning to use a feeding tube and how to take care of a special little boy would definitely be a chore.
Trell had accomplished so much in the first few weeks of life. Finally doctors released Trell, and his parents were allowed to take him home. Being on a special formula and taking eight different medications was going to be a huge responsibility for his parents. God knew that Kellie and Logan were the ones to take care of Trell. They were totally determined to make Trell’s life as normal as possible and give him the best of care.
Doctors had told us from the beginning that Trell would die before he was 6 months old. On September 16, we celebrated his life. Family and friends met at the Whitis’ for fun and to thank God for allowing Trell to be with us this long.
With Logan trying to hold down a full time job, a lot of the Trell’s appointments to doctors and therapy Three times a week at Cardinal Hill in Lexington became Kellie’s responsibility. Trell has had many seizures and been on many different medications, but his first birthday was soon approaching.
March 16, 2011, Trell Bradley Whitis celebrated his first birthday. One hundred and fifty-two people joined us in celebrating something that was not supposed to happen. Thank you God for allowing us to love and care for this active little red, curly headed baby boy.
Several trips to the emergency room resulted in Trell being flown to UK twice and taken by ambulance once. This was a very scary time for all of us. He would normally be admitted for several days at a time to help him regain his strength. Doctors had finally figured out Trell’s correct medicine dosage and he was seizure free for over one year.
Trell was growing and developing at a very great pace. He still was having some issues, but we had to remember Trell was not supposed to be with us this long. We also know that Trell has a long hard road in front of him.
After much research, Trell’s parents decided it was time for a change with his treatment. Cincinnati Children’s Hospital and their renowned team of doctors would be taking care of Trell. His third EEG determined that Trell’s brainwaves were of a normal 15 month old. Doctors changed some dosages and weaned him off of some of his medication. Unfortunately, Trell began having seizures and developed some set backs.
Trell became very ill and had seizures for six hours straight. He was taken to the emergency room where he was stabilized and transferred to Cincinnati. The helicopter was unable to fly due to the weather so he had to be taken by ambulance. After waiting for several hours we were told that our local ambulance service could not cross the state line. Finally an ambulance from a neighboring town agreed to transport Trell.
With family and friends by our side praying and giving us encouragement we will trust God and remember who is really in control. Trell has over fifteen hundred members on Face book that stay in touch with him weekly. As a member of Trell’s family it means so much to know that we are not alone in this journey!
March 16, 2012 will be a celebration like no other. Trell will be two years old and people from all over the world will wish him a happy birthday. He has a way of capturing everyone’s heart. Trell is a true blessing to us all and I am so honored to be his Mamaw!! Trell and his big brother Tyce are truly gifts from God!!
2012 was a great year for Trell! Yes, it was filled with a lot of ups and downs, but looking back, he had more ups than downs!! He was hospitalized at Cincinnati Children's Hospital twice, the first time was to get tubes put in his years. The second time was to receive a G-Tube. Both surgeries were very successful. Learning to take care of the g-tube was a bit stressful and knowing what to do if and when it come out was hard, but Kellie and Logan were real troopers!! As always they adapted and everything has been great! He now receives his medicines through his tube and some of his feedings. Trell is able to eat most things by mouth.
With the help of his big brother Tyce, Trell is walking anywhere he wants to go!! It is such a great feeling watching my grandsons run and play!! Trell falls a lot, but he doesn't waste any time getting up!!
Trell will turn 3 years old in fifty-five days! He will be entering preschool where he will be receiving therapy. I am really nervous and scared for Trell, but I know he will also master every challenge he faces!!
Mamawt Mamawt
1 Response Jan 20, 2013

If there is anyone that can help us spread the word about this terrible disease that has taken so many lives, and some day will take my precious grandson, PLEASE help tell others about NKH!!!