Patient Story

A Letter from a Parent:

To the staff and volunteers of Arkansas Pediatric Facility:

Our family was gifted with the most precious baby boy on January 5, 2010 and he was absolutely perfect in every imaginable way!  I could not have been any happier and our entire family all felt an immense amount of pride and joy to welcome Trenton into this world.  His older sister Nevaeh was the most proud . . . she finally had a little brother of her very own to play with.  All of these wonderful feelings of happiness would continue until February 2, 2010.  Exactly 28 days after birth, Trenton's life and ours would forever be changed.

Trenton had 19 seizures that day.  Over the next several months, multiple appointments and hospital stays, doctors ran test after test attempting to determine the cause of his uncontrollable seizures.  No one could explain why he had irregular brain waves or why with each seizure his physical and mental state was deteriorating.  I could not reconcile in my head or heart how a healthy baby with no indication of an underlying problem could have this happen to him.  He had just started to lift his head up off my chest when I would hold him and follow me with his eyes when I would walk across the room.

Over time and many medications, we were able to partially "manage" his seizurs.  His neurologist decided that the only conclusive diagnosis was Ohtahara Sydrome.  Trenton would be lucky to make it to his first birthday.

Just as she had predicted, Trenton's condition rapidly declined, eventually requiring a feeding tube and a tracheostomy in order to survive.  Trenton and I spent more time in the hospital than we did at home.  Often times, Nevaeh would stay with family or friends for extended periods of time and it was extremely difficult for her to understand why she could not have her family at home with her or why he was sick.  Eventually, doctors approached me about the unthinkable - a long-term care facility.

I could not stomach the idea of not taking care of my child!  After all, as his mother, it was my sole purpose in life to care and provide for him!

After urging from my family and the Palliative Care team at Arkansas Children's Hospital, I visited APF for the first time during one of many of Trenton's stays at the hospital.  I had experience working in a nursing home and knew what to expect.

My grandmother and I came unannounced.  The interior was bright and vibrant and we were welcomed immediately.  To my surprise, we did not need to make an appointment for a tour.  We saw the classrooms full of children that were being cared for, played with and loved on.  There were smiles and laughter.  These children, who had similar issues as my son, were being treated with the utmost care, all while being completely unaware of my existence.  Next were the bedrooms, each with its own colorful theme, stocked with familiar equipment and devices we used on a daily basis.  Finally, we sat down and were given all of the information about APF and the services provided.

I had walked into those doors panic stricken and full of doubt.  I left with absolutely nothing negative to say.  Arkansas Pediatric Facility had absolutely surpassed all of my expectations;  however, I was not sold on the idea.  I flippantly agreed to place his name on the waiting list.

In the fall of 2011, Nevaeh entered public school.  I had to work in order to provide basic necessities for our family, and insurance would only cover a portion of the in home nursing Trenton needed.  I became gravely aware that if I did not get Trenton the round the care that he desperately needed, he was going to die, and Nevaeh needed me too.  I could not continue to do this alone.

I made the most difficult decision I have ever had to make --- Trenton moved to APF on November 17, 2011.  It was the scariest, darkest part of my life.

Words cannot express how afraid I was . . . afraid to admit I could not care for him as well as you all could, afraid of admitting defeat, but most afraid that he would not thrive.  Much to all of our amazement --- he did!  We all did  . . . We learned to rely on one another to see him through each day.  Over time, you learned all of his "Trentonisms"  and I learned to trust.  We have shared memories together, such as his first REAL bath and the infamous Brohawk.  We have laughed, cried, and prayed together -- We have become a family.

I am convinced that without each and every one of you, Trenton would not be with us today.  You breathed life into our family.  You have given Trenton a life of comfort and care, you have given Nevaeh the opportunity to play with him, as she so desperately wanted to while he was at home, but also the ability to have a childhood of her own.  You have also made it possible for me to be a mother to both of them without sacrificing their quality of life.

My family and I cannot express our gratitude, appreciation, and utmost respect we have for each of you.  You are all angels in disguise.  Thank you for the sacrifices you have made.  Thank you for the relentless care you have provided.  Thank you for your patience and understanding.  Most importantly, from the bottom of my heart, thank you for loving him as he was your own.

Sincerely,

Frankie Milligan 

 

 

 

 

 

Malik's Story

 

Malik is a lovable 10 year old little boy whom has the passion and the drive to beat the odds on a daily basis.

On many occasions he smiles and giggles even though his health is quite fragile. Malik was born premature, only weighing two pounds. He has cerebral palsy, vision impairment, microcephaly, seizure disorders and severe upper respiratory difficulty.

He was placed in Department of Human Service’s custody when he was six months old due to shaken baby syndrome. He was admitted to Arkansas Pediatric Facility in 2003. Malik has endured a many surgeries and a number of hospitalizations. When he enters Arkansas Children’s Hospital, a great deal of the doctors and nurses know him by name. Many will never forget May 2006 when Malik’s health began to fail severely and he was placed on a ventilator.

After much consideration and recommendation of medical staff, the decision was made to remove Malik from the ventilator. Staff from APF and Children’s Hospital gathered around Malik in order to be by his side as he was taken off of ventilator support. Malik continued to breathe on his own and many doctors and nurses begin to leave the room stating they would check back on him later in the day. However, Malik survived without the constant support of the ventilator, and he was released from the hospital within a few days to return to APF with the aide of Hospice.

Malik’s health continued to improve and hospice discontinued visits. During this time, my husband, (whom is Malik’s biological cousin) and I discovered that Malik was living here in Little Rock and his health was failing.

We went to visit Malik and from that day forward, all of our lives changed. We were astounded to find out Malik had been located at Arkansas Pediatric Facility for 3 years and we never knew he was there. He was only five minutes away from our home. With the approval of his DHS case worker and APF, we begin to visit Malik on a daily basis at the facility. From this point we received approval to take Malik on home visits. His first overnight visit was for Christmas in 2006, which was truly a blessed Christmas for us.

We were introduced to the idea of adopting Malik and allowing him to stay at APF, but unfortunately the adoption process was unsuccessful. APF suggested the idea of obtaining legal guardianship over Malik instead and this was granted by the courts in 2007. Malik continues to come home for visits and we also check him out to take him to church at First Assembly of God in North Little Rock, where he attends the Cool Kids class. His birthdays are always celebrated at Chuck E Cheese surrounded by family and friends. On some occasions his health still begins to fail but as he did in 2006, Malik regains his strength and continues to go forward.

Many of the staff at APF state how much of a difference that we have made in Malik’s life, but we have to give them credit as well. They welcomed us with open arms over four years ago and they continue to play a special role in Malik’s life, too. The entire staff at APF always steps up to the plate to assist Malik and ensure that all areas of his care are maintained. We are all on a first name basis and this makes a true difference when individuals play a major role in taking care of your child. The staff always welcomes the recommendations and ideas of family members. If any issues arise, they are resolved in an immediate and positive manner. When we think of how the APF staff has played a major role in Malik’s life, we can do nothing but say “Thank You”. The APF staff is more than just a group of individuals that takes care of special needs children. We consider them a part of our family. The care they provide for Malik is on a personal basis which is truly commended.

We understand Malik’s life expectancy is stated as being limited, however we all work together to ensure that he is comfortable and loved which is what he truly deserves.

Eddie Collins and Catinna Morton-Collins

 

UPDATE:

Sadly, Malik passed away in September 2011. He fought a courageous fight and was surrounded by family and loved ones all the way until the end. The last several years of Malik’s life were sprinkled with both good and bad days. He had several episodes of illness and/or respiratory distress. But he would handle these days with an amazing strength and perseverance. He also had some good days when he would smile and inspire everyone with his personality. Malik taught all that knew him how to handle whatever obstacles are presented in life with grace and dignity. The family taught a valuable lesson in unconditional love and support of a loved one.   

Malik will be missed by many and forgotten by none. His story will live on at this facility, at Arkansas Children's Hospital, at the First Assembly of God of North Little Rock, and by many others who had the good fortune to know one of God's miracles on earth.