Zeke's Medical Snapshot
If I were to add up all the medical issues of my first 8 children and those of all my extended relatives, the list might come close in size to the number of Zeke's diagnoses. If I were to list them out for you, reading it may feel like reading a dictionary.
My oldest son, Jake, who sometimes looks at the world through a mathematical lens figured out that the length of 3500 pages put end-to-end would equal about a half a mile. That is how many pages Zeke's medical birth records are.
What happened?
Before his birth, his mother tested positive for strep B and for whatever reason was not treated or refused treatment. Because of this, he was born with Sepsis. Additionally, she had gestational diabetes and preeclampsia. She was strongly advised to have a cesarean but refused. His vaginal birth was horrific. The doctors had to use forceps to pull him out vaginally. During this time his brain suffered a severe lack of oxygen and blood, Hypoxic-Ischemic Encephalopathy (HIE). This caused extensive brain damage to both spheres of his cerebellum. At some point, he also had a hemorrhage in the frontal area of his brain.
When he was placed in our care, we discovered mysterious scars on his head underneath his hair. We learned they came from "spontaneous lesions of the scalp due to edema." Basically, his head swelled so much that it split the skin on his head. Nauseating! This trauma has resulted in leaving him with half a functioning brain. It has affected every area of his life.
Major Diagnosis
It didn't take long for Zeke to receive a diagnosis of Cerebral Palsy (CP). Along with this has come micro encephalopathy (small brain, small head), Cortical Visual Impairment (CVI), and a host of MANY other diagnoses and challenges and that continually leg off the initial declaration of CP.
Zeke's CP is further defined as spastic quadriplegic. Spastic means he has muscles that continually contract and cause tightness or stiffness that prevent him from normal movement. Quadriplegic means all four quadrants of his body are affected. This affects all his muscle groups: all limbs, eyes, mouth, neck, vocal cords, digestive and waste systems. This ultimately affects his skeletal structure as well. He now has beginning hip dysplasia. Eventually, this will require surgery.
Medications
Zeke takes medication for seizures. Although he has never had a severe seizure, only small tick-like ones, the medicine is preventative. We see an increase in his seizure activity when he is overtired, ill, or has a weight increase. We carry an emergency medication in the case he does ever have one. He also takes Cuvposa (chronic drool reduction), Prevacid (reflux), Flovent (aspiration prevention), Flonase (reactive airway disorder), and a multivitamin.
Feeding
Until the fall of 2018, Zeke had not had a hospitalization since he was a newborn, which is quite surprising. That fall he was admitted for hypothermia (90-degree temp) and unresponsiveness. He was declared septic and eventually diagnosed with pancreatitis. Because his recovery was so long and it was necessary he be fed through an NG tube (a tube from the nose to stomach) during the time, he ultimately lost the muscle coordination to drink a bottle.
Before the hospital stay, his main diet was bottle fed Pediasure and pureed table food. A G-tube or feeding tube (external port directly to the stomach through the abdominal wall) was now imperative. Since then Zeke has been G-tube fed to receive his main calories and hydration (more on G-tube feeding in a future post). He still can eat mashed or very soft food by mouth, but it takes a considerable amount of time for it to be sufficient. When he does eat orally it is more to add variety and pleasure to his days. He loves good food just like anyone else, and around here he gets some pretty good eats!
Vision
We were told when we met Zeke that he was blind. As time went on and we spent more time with him at his previous foster home, we all agreed that he was seeing something. He would go through phases of turning toward a particular color. One-week he preferred red, another blue. We also began noticing him turn toward noises. If he was not seeing anything, he would have stopped looking altogether and relied on other senses.
An appointment with a different ophthalmologist resulted in Zeke getting glasses for being very near-sighted and astigmatism. (Oh, my heart! He looks so cute in them! Who doesn't think a baby in glasses is cute?) He does have some optical nerve damage but we were told there is plenty of pink healthy tissue. Since receiving glasses, he is improving and his eyes are getting stronger. He will always struggle with nystagmus, but it is much less than it used to be.
What else?
Zeke deals with repeated g-tube infections, erratic sleep patterns (either insomnia or excessive sleep at any given point in the day or night), a couple of urinary issues that will be resolved in the near future with some minor surgery, constipation, unexplained weight gain, and……….. He is seen and treated by 16 individual doctors/specialists. Am I exhausting you yet? It is a lot to keep track of, for sure! Chris tells me that my organizational skills have come a long way since we were married. Hallelujah!
Where do we go from here?
Having Zeke has made all of us more thankful for our abilities, and it also gives us the perspective that our abilities do not determine our value or quality of life. Zeke is a happy boy! It doesn't take much observation time to see it. He may never walk, talk, see clearly or eat and drink fully on his own. But he will always be loved for being just the way he is. He loves to have his brothers read to him. He knows and reacts when Daddy comes home from work. He likes to go places, even doctors’ offices. The receptionists love on him so well. He likes the sound of our pastor's voice and attempts to preach along with him. He likes food, especially melted chocolate or brownie batter. Yum! Despite his disabilities, Zeke simply enjoys life and we enjoy life with him. God put him in just the right family.
We will always be adjusting and dealing with new medical issues as Zeke grows, but when he smiles ... oh, how our hearts swell. All the time, difficulties and struggles that caring for him involve, are worth that smile. There is more joy than sadness. Yes, we have very hard days and nights sometimes, but we are the ones that get to help him through it. (Yes! I said, "…get to.") We are his biggest fans, “The Fam Club”. We all want to be rejoiced over, and he is one rejoiced over little boy!
“The Lord your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
in his love, he will no longer rebuke you,
but will rejoice over you with singing.”
Zephaniah 3:17