ZAK - 20 YEARS OLDRetrun to 22q Stories
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This is a long story as Zak is 20 years old.....we love him with all our hearts and he has taught us so much about life and living......here goes:
I was active duty Air Force at the time of my pregnancy. Zakry was born, 9 ½ weeks early, in April of 1993 weighing only 2lbs., 13oz. He was born by emergency C-Section due to severe fetal distress and a grossly underdeveloped esophagus with no connection to his stomach. In utero, he was unable to swallow amniotic fluid and void it out of his body. My body, unaware of this complication, produced more amniotic fluid on a daily basis. Every time I moved, it was as if a tidal wave was crushing Zakry and his heart rate dipped to dangerously low levels.
Shortly after Zakry was born, his Esophageal Atresia was diagnosed. I was unable to hold him as he was so medically fragile. The following day, a G-tube was placed in his stomach so he could receive feedings. He lay in the NICU for 88 days, before I was able to bring him home. The day before he left the NICU his surgeon routed what little esophagus he had to the side of his neck and created an opening for his saliva to drain. Zakry needed to grow before he could undergo any reconstructive surgery. I received an Honorable Dependent Hardship Discharge because my baby needed 24/7 medical care.
I was his nurse before I was his Mom. There were tube feedings around the clock, physical, occupational, and speech therapies. Countless doctor appointments filled our calendar on an almost daily basis. My husband and I divorced shortly after Zakry was born. The emotional stress of being a single parent for Zakry left me feeling close to insanity.
Doctor after doctor didn’t know what was wrong with Zakry; instead of making referrals, they threw out labels. I was told he had Cerebral Palsy, Hypotonic Cerebral Palsy, severe Mental Retardation, you name it. I was even told by a Neurologist and his team, “Don’t expect your baby to ever sit up, crawl, walk, eat orally, talk or lead anything close to a normal life”. I never gave up on Zakry. I continued the PT, OT and speech anyway!
In May 1994 when he was 13 months old, Zakry had his stomach pulled through his diaphragm and placed in his chest where the surgeon attached what little esophagus he had to his stomach. Because he had never sucked on a bottle or swallowed food, Zakry lost the instinct to breath, suck and swallow simultaneously. It was a long road to teach him to eat orally. He was fed through a J-tube placed 6 inches into his intestines. Zakry nearly passed away during his recovery which turned into 65 days. He was in the PICU, wires of all kinds were stuck to his skin or wrapped around his arms and fingers, attached to various machines that monitored his blood oxygen level, heart function, pulse, respiration, blood pressure and so on. I learned to watch his face and body to see if he was doing ok. Just a few days after his surgery, Zakry gave us a good scare. But thanks to his medical team lead by Dr. Bleicher he pulled through. Not only did he save my son, but he provided me with the strength to battle the emotional toll I was experiencing at the time.
When Zak was 14 months old, I met an Active Duty Staff Sergeant named Terry Pyle. Terry won me over; we married in 1995 and he adopted Zakry in 2000. One would never be able to tell that Zakry and Terry are not biologically related. They have an unbreakable bond.
Zakry learned to sit up at a year old; he crawled at 18 months. He successfully swallowed food at age 2 ½; it was a piece of fudge! He took his first steps at three years-old. His J tube was removed shortly thereafter. Zakry had numerous day surgeries to expand his esophagus as it would stricture shut with no notice due to scar tissue. He was hospitalized countless times for aspiration pneumonia. Surgery after surgery followed in the next years.
When Zakry was 9 ½ years-old, an attentive, astute Pediatrician referred us to Genetics. The Geneticist merely looked at Zakry and reached for his huge genetics book. He thumbed through and showed me a picture of a child. He asked me “Do you see facial similarity between Zakry and this child? I think your son has 22Q11/Velo Cardio Facial Syndrome; we will do a blood test to be sure.” Zakry finally had a diagnosis! What a relief!
We have been blessed to receive care from Dr Shprintzen. We made the 918 mile journey to see him and he addressed many issues including Zakry’s severe speech complications. It was an inspiring experience to have Zakry receive a comprehensive VCFS evaluation by Dr Shprintzen.
Zakry also has Disorganized Schizophrenia. The onset occurred in February of 2010 when he, for unknown reasons, tried to commit suicide. The ordeal was terrifying. He came so close to dying. After he was discharged from the hospital in Nashville he stayed at the children’s psychiatric center for two weeks and received the proper dose and mixture of meds to control his Schizophrenia.
Zakry is also mildly intellectually disabled. He learns differently than most of us and needs special guidance in school. He is still unable to speak audibly. He is fluent in sign language and uses his IPod Communication app that voices what he types. Still, not being able to speak must be so frustrating. Most of the time, Zakry handles it with grace and patience.
He graduated high school at the age of 19 and we, his parents, have conservatorship over him. We found a wonderful residential home for him to live in, with the goal for him to learn the life skills he needs to live independently. We would texted back and forth with him every day; many times a day. The “honeymoon period” at the residential home lasted about five months and then things went downhill from there; we brought Zackry back home. We are grateful that Zakry had the opportunity to live as independently as possible. Although things didn’t work out, he had the chance everyone deserves.
Currently, at age 20, he has or has had; Medullary Sponge Kidney, failure to thrive, severe speech impairment, Psychosis, OCD, Hyper nasality, Nasal Regurgitation, Borderline Intellect, Cognitive Learning Disabilities, Scoliosis, Kyphosis, Polymicrogyria, Severe Anxiety, Disorganized Schizophrenia, Multi-Focal Clonic Seizures, Partial Non Function of Lung, chronic ear infections, Inguinal Hernia and a host of many other issues. He has undergone 19 major and minor surgeries.
Every day is hard for Zak and we cling to brief moments of joy and happiness that find their way and shine through the pain and illness that he battles. Thankfully, gone are the days of dealing with doctors who don’t want to listen to my concerns; of misdiagnosis; and professionals telling me what my child won’t do; gone are the days of isolation. Zakry is doing well in spite of everything. We love him with all we are and see a Social Worker as a family once a week to keep our family on track. And the story goes on from here…