Update….
3/15/2003
I know many of you are worried, so I wanted to update what I can at this time. Baby John is 15 days old. Baby John is still in the N.I.C.U at Children's Hospital Cincinnati, Ohio. A high-tech newborn nursery for critically ill babies. Chastity and family have learned much in such a short time. Diaphragmatic Hernia is a very serous and complex condition. Baby John’s condition is not much better. He has not opened his eyes and the Doctors keep him in comma state. Baby John is not in a comma but the Doctors are keeping him is such state because of his condition. Baby John is fighting this and it is keeping him unstable for surgery. He cannot move and he needs to let the violator breath for him. It gives oxygen and he has a CPAP gives continuous positive airway pressure which helps to maintain the necessary pressure needed to keep his lungs inflated. As you can see in pictures Baby John has a Endotracheal Tube-(E.T.Tube)A tube placed through his nose help provide mechanical or manual ventilation. Baby John's intestines are up in his chest constricting his heart and lungs. Baby John has not had to be put on ECMO as of yet. This is good.
His mother cannot hold him and many times cannot touch him.
This is very hard on Chastity. She feels so helpless. Children's Hospital has scheduled surgery on three different occasions but rescheduling saying that baby John is not stable for surgery. Next scheduled date for surgery is 3/18/2003 As I said Diaphragmatic Hernia is a very complex condition. The Doctors say Baby John is holding his own and is a fighter. This is good and this is also keeping him unstable. When the Doctors fine the right measures of maintaining Baby John he will settle down and recover enough for surgery. I wish that I could tell more..There is so much to tell. Hopefully I will have better news on next update. Please remember Baby John and his mother in prayer.
Peace be with you.
Grandma
I printed out theses Medical Terms for Baby John's mother and they have helped her much. All of theses terms do not apply to Baby John but most do and will.
Dealing with the birth or the eminent birth of a sick child is devastating and confusing in itself-not understanding what the doctors are saying makes it even more difficult. The first few days after the birth and diagnosis are overwhelming-most parents feel like they are living in a haze and can't remember exactly what the doctors said or how a treatment is defined. We encourage all expectant parents and parents of newly diagnosed children to print off this page and carry it with them-it can be your "translator" and help you sort through all of the medical jargon that doctors and nurses use.
ABG- (Arterial Blood Gas) a blood gas drawn from an artery; usually from the patient's arm, leg, or central line.
AFP Test- (alpha-fetoprotein) a blood test performed on pregnant women that can possibly identify fetal abnormalities by measuring the maternal serum level; usually performed at 16-18 weeks of gestation.
Agenesis- absence. Agenesis of the Diaphragm-complete absence of the diaphragm. Amniocentesis- a medical procedure performed on pregnant women that can identify possible fetal abnormalities by running lab tests on amniotic fluid. It involves inserting a needle through the woman's abdomen and into the amniotic sac and then removing an amount of amniotic fluid for testing.
Analgesic- (pain killer) medication that relieves pain and discomfort (Tylenol, Acetaminophen, Aspirin, Tegretol, ect).
Antibiotic- a medication that prohibits growth of or destroys microorganisms that cause infections (Amoxicilline, Amphotericin, Erythromycin, Gentamicin, Azapen, Staphcillin, Vancomycin, Tetracycline, etc.)
Artery- a blood vessel that carries blood from the heart to the body's organs.
Bagging- a procedure that uses an Ambu Bag to manually pump air into a patient's lungs.
Blood Gases- a measurement of the amount of carbon dioxide, oxygen, and acid in a patient's blood. These measurements are needed to determine the amount of oxygen and ventilator support that a patient needs.
Blood Saturation-the percentage of oxygen contained in the patient's blood. For a healthy person, 100% is ideal.
Blood Transfusion-carefully screened blood given to a patient to replace blood lost during a surgical procedure.
Bochdaleck Hernia- (Foramen of Bochdaleck) an opening through the left diaphragm between the chest cavity and abdominal cavity toward the back of the body. It is the most common form of diaphragmatic hernia.
Bradycardia- abnormally low heart rate.
Broviac- a more permanent type of IV (central line) put in an artery in the patient's chest.
Capillary- a blood vessel that carries blood between the smallest arteries and the smallest veins.
Carbon Dioxide-gas exhaled by the lungs after oxygen is absorbed. Insufficient exchange of oxygen and carbon dioxide can cause serious problems for the patient.
CBG- (Capillary Blood Gas) a blood gas drawn from a capillary blood vessel; usually from the patient's toe or finger.
cc-liquid measurement used by many hospitals. 30cc = 1 ounce.
Cental Line- a more permanent type of I.V., surgically placed in an artery or vein, yet less evasive than a broviac.
Chaplain-trained person who can provide you with religious support. Most hospitals either have, or can find, a chaplain within your religion. Many can perform dedications and baptisms at a patient's bed side.
Chest P. T. - physical therapy that involves "beating" on the patient's chest. Though it may be noisy and alarming to you, it is an essential part of care to help prevent pneumonia.
Chest Tube- a drainage tube surgically placed in the patient's chest and connected to a suctioning device to prevent fluid from collecting in the chest cavity.
Chronic-any long-term medical problem.
Chronic Care Facility- a facility that provides long-term care for patients that cannot receive necessary medical care in their own homes.
Congenital Abnormality- a defect present at birth.
CPAP- Continuous Positive Airway Pressure which helps a patient to maintain the necessary pressure needed to keep his/her lungs inflated.
Culture- a sample of blood, secretions, stool, urine, or other physical matter taken from the patient and sent to a lab to look for disease and infection. If the culture is positive, it will be treated with different medications to find which can kill the bacteria present.
Diuretics-medications that increase the amount of urination; used to avoid or decrease large amounts of fluid buildup or edema; patients may need extra potassium chloride while on diuretics (Edecrine, Diurel, Lasix, Spirolactone, Hydrochlorothiazide etc.)
DNR- (Do Not Resuscitate) order given to the medical staff by a patient's next of kin if they decide it would be in the patient's best interests to let he/she die naturally.
ECMO- (Extracorpeal Membrane Oxygenation) a very large and complex machine that takes over the work of the patient's heart and lungs. A very large catheter, a plastic tube, is placed in an artery in the patient's neck. Blood is then removed from the patient's body, oxygenated, and returned to the patient.
Edema-swelling Endotracheal Tube- (E.T.-Tube) a tube placed through the patient's nose or mouth to help provide mechanical or manual ventilation.
Epinephrine- a medication that can be used to restore cardiac rhythm during cardiac arrest.
Familial Abnormalities- birth defects that occur in two or more family members.
Fellow- a doctor training to become a specialist in a given field of medicine.
Femoral Line- a central line placed in an artery near the patient's groin.
Folley Catheter- a plastic tube inserted into a patient's ureter to aid in urination and taking "clean" urine cultures.
Gastointestinal Reflux- an illness that occurs when the stomach contents "backup" into the esophagus, where they can possibly be aspirated (inhaled) into the lungs. This is a common problem for babies born with CDH that can be controlled with medications and/or surgery (Nissen fundoplication).
Genetic Counseling-counseling that involves providing information to at-risk parents who are expecting a child or planning a pregnancy or who have a child with birth defects or chromosomal abnormalities. It informs parents of their risks of fetal abnormalities in present or future pregnancies. It is advised for couples who are older or who have family histories of birth defects or chromosomal abnormalities. Geneticist- a specialist in the study of genetic abnormalities and birth defects.
Grams- 454 grams = 1 pound.
Hernia- a protrusion of an organ or tissue through a weak area in muscle or other tissue that would normally contain it.
In-Utero Repair-procedure in which the diaphragm is repaired while the mother is still pregnant. It is experimental, done in only a few hospitals, and certain guidelines have to apply.
Kilogram- (kg) 1kg = 2.2 pounds.
Lab Technician-an individual trained on how to draw and analyze blood and other body fluids.
Lung Hypoplasia- failure of one or both lungs to develop fully.
Medical Student- a student in medical school training and taking courses to become a doctor. Medical Team-doctors, nurses, technician, dietitians, and therapists assigned to a patient's care.
Morgagni Hernia- (Foramen of Morgagni) diaphragmatic hernia occurring near the front of the body, near the breastbone.
Narcotics-medications that cause the patient to sleep; highly addictive and must be weaned slowly (Fentynal, Methadone, Codeine, Morphine, etc.)
Nitric Oxide- a gas that is used as an inhalant in order to try to enhance lung growth and recovery Nissen Fundoplication- a surgical procedure where the opening between the lower end of the esophagus and the top part of the stomach is narrowed to prevent stomach contents from flowing backward into the esophagus.
NG-Tube- (nasogastric tube)-a plastic tube inserted through the patient's nose into the patient's stomach or intestines to aid in digestion when the patient cannot eat by mouth.
N.I.C.U.- (Neonatal Intensive Care Unit) a high-tech newborn nursery for critically ill babies. Nurses-individuals trained to take care of a patient's hygienic and medical needs, giving medications, inserting IV's, and recording medical information.
Nutritionists-trained professionals with special knowledge about the necessary nutrients needed for a patient's growth and development.
Pavulon- a medication that temporarily paralyzes the patient's muscles to keep him/her still when their condition can be threatened by movement (as when on ECMO). It should not be given without a sedative or the patient's mind will still be awake.
P.I.C.U.- (Pediatric Intensive Care Unit) a hospital ward for critically ill children.
Physical Therapists-individuals who help patients recover muscle-tone lost during their illnesses.
Pneumonia-illness caused by bacteria which causes fluid buid-up in the patient's lungs.
Polyhydramnios- excess amount of amniotic fluid; usually an indicator of possible fetal problems or abnormalities.
Psychologist-an individual with training in human behavior and development who can asses a patient's development and assist the patient's family as they adjust to having a sick child.
Pulse-Oximeter- a machine that reads the patient's heart rate and blood saturation levels through a probe taped to the patient's toe or finger.
Resident- a doctor in training under the guidance of a more experienced physician.
Respiratory Therapists-trained individuals who assist in the operation of ventilators and perform procedures which aid a patient's breathing and oxygen intake.
Room Air- a term used to describe the fact that a patient is breathing the same amount of oxygen that normal, healthy people would breathe; 21%.
Sedative- a medication that calms and/or puts the patient to sleep so that he/she will not feel pain or discomfort (Versed, Ativan, Valium, Chloral Hydrate, etc.)
Sepsis- infection (septic-infected).
Social Worker-an individual who helps families deal with their reactions to having a sick child and helps them make necessary housing, transportation, and financial arrangements.
Suctioning- a procedure during which a small catheter, attached to a suction machine, is inserted into a patient's trach or endotracheal tube to remove secretions that a patient could not normally cough out.
TPN and Lipids- high calorie I.V. fluids used for long-term nutrition.
Tracheal Occlusion- a new procedure that like in-utero repair, involves an operation on the mother during pregnancy. Rather than correcting the diaphragm, this procedure clamps off the baby's trachea, causing the lungs to grow and push the organs back into the abdominal cavity.
Vein- a blood vessel that carries unoxygenated blood to the lungs from the body's other organs.
X-ray Technician- a trained
individual who operates both portable and stationary x-ray
equipment.
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