I WORK WITH FAMILIES THAT HAVE CHILDREN WITH CEREBRAL PASLY AND DEVELOPMENTAL DELAYS AND /OR DWARFISM. Many have these complications due to genetic problems and many have it due to complications of pregnancy and birth. It is such a GRAVE ALL PERVASIVE DEVASTATION to the couple. AND I AM PRESENTING THIS TO HELP THE PUBLIC BE MORE SENSITIVE. 1. These babies often grow to about the size of a 6 year old, a few may get to a little over 4 feet. Most live to about their thirties. 2. Often there are problems eating so a tube is placed through the abdominal wall into the stomach and they are fed formula through it. Some can eat a little but one must be very careful in feeding them so they do not breath the food into their lungs. Some can eat without aspirating into the lungs but their interest in food wanes and it is necessary to give supplemental feedings through the stomach tube. 3. Most of these babies can not breath well for several months or even years after birth, and must have a Ventilator do the breathing for them. My job as an RN Clinical Supervisor, is to train the family and the bedside Licensed Vocational Nurse about the function of the Ventilator and all the buttons that sustain the clients life: Tidal volume, sensitivity trigger, rate of breath, the high alarm and low alarm, pressure support, and pressure control, PEEP and PIP and so on. A client can be placed into metabolic acidosis if the above items are not correctly in place. 4. There are vital signs that indicate problems and the parents as well as the nurse must know what these signs are and how to deal with them using medication and the Ventilator. 5. A high percent of these babies can not travel well and AT THE LEAST, they must travel with stomach tube and feeding supplies, a ventilator, oxygen, medications, and of course items to clean up their urine and poop, as well as specialized items such as braces to keep legs in place, and neck brace, and helmet and it goes on with wheelchair, suction, and emergency back up battery. These parents can not leave the house unless the nurse is present. They can not have a babysitter at home nor take child to one. They can not leave them with their grandparents unless grandparents are willing to be taught. These parents can not work effectively to sustain themselves due to the need for someone to be with the child at all times. Funds are available through Medi Cal and Medicare to pay for about half the cost of nursing care and medical care. IT IS A DIFFICULT CHOICE TO BRING A BABY TO FULL TERM WHEN IT IS KNOWN THAT THERE IS GENETIC DIFFICULTY SUCH AS THE CEREBRAL PALSY WITH DEVELOPMENTAL DELAYS. ALL THE CHILDREN THAT I HAVE SEEN DO NOT READ, FEW SPEAK, NONE CAN DRAW A CIRCLE OR A STICK MAN, ONLY A COUPLE COULD CATCH A BALL, A VERY FEW CAN THROW A BALL. THERE IS NO SUCH THING AS KNOWING COLORS, OR NAMES, OR UNDERSTANDING CAUSE AND EFFECT. BASICALLY MOST ARE AT ABOUT AGE NEWBORN TO AGE 1 YEAR OLD MENTALLY FOR THEIR ENTIRE LIVES. HAVE MERCY AND KIND WORDS FOR ANYONE WHO HAS THE COURAGE TO SUPPORT AND LOVE THESE CHILDREN. AND AND AND: BE KIND AND NON JUDGMENTAL TO THOSE WHO DECIDED TO TERMINATE A PREGNANCY.
Posted on: Sat, 02 Nov 2013 19:28:02 +0000
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