Nov 23, 2011

Learning Losh Speak

Wondering what all of the medical terms we use here mean? Below are definitions and explanations for some of the most common terms used in reference to Aloshua and his condition. We've attempted to make them as simple as possible for you. Have questions about something not on the list? Let us know!

Spina Bifida / A birth defect where a person is born with a hole in their back and often the spinal cord or cysts are coming out of that hole – Aloshua did not have anything coming out of his hole (hence why doctors didnt realize he had spina bifida until he was a day old) He just had a straight shot right to his spinal cord. He had no skin or bones protecting his spinal cord. There are 3 different types of Spina Bifida. Aloshua has spina bifida myelomeningocele, the most severe and common type of spina bifida.

Arnold Chiari Malformation /A malformation of the brain/skull that causes the cerebellum to protrude/herniate down the base of the skull. Just imagine somebody pushing your brain through the back of your skull… Its something like that. Aloshua has a Type II Malformation, meaning that in addition to the herniated cerebellum, he has spina bifida and hydrocephalus caused by the Chiari (or closely related to the Chiari) as well.

Hydrocephalus / Build up of spinal fluid in the brain – causes pressure inside the skull and in most cases people with hydrocephalus have big heads and require shunts

Oscillator (HFOV) / Imagine breathing 100 times a minute.. Now double that..Now add another 100 times per minute.. And now add a few more times per minute.. An oscillating ventilator aka High Frequency Oscillating Ventilation breathes a breath rate of 150+ per minute. Its not uncommon to see a rate of 425 in young infants. Its never good to have to require a ventilator, but to have to use an oscillator means its pretty darn bad

Ventilator/ A machine that "breathes" for Aloshua like the Oscillator by pushing air into and out of his lungs at a designated rate per minute.

Tracheotomy / Hole in the neck were a tube is placed.. That tube now becomes the “nose” where the person breathes. This is also called a "trach"

VP Shunt / A drain tube placed in the ventricles of the brain to drain excess spinal fluid. The excess fluid goes into the peritoneal region (aka the abdomen)

GT – Mickey – Feeding Tube / A tube placed into the stomach to aid in feeding  - Losh can eat by tube and by mouth, often times BOTH at once.. Can YOU eat while you eat??

Catherization/Cath - Inserting a tube into the bladder to drain urine due to a dysfunction of the kidneys/bladder. Aloshua is "cathed" every 4 hours.

Hernia / Picture a bathroom filled with the typical bathroom fixtures. Now picture all of those fixtures magically making their way through a hole in the wall.. A hernia is basically the same things only with the internal organs and the “rooms” that contain them. Losh was born with multiple hernias throughout his body.

MRSA Methicillin Resistant Staphylococcus Aureus / A really yucky infection that is resistant to certain antibiotic treatments (methicillin). Most people freak out about staph infections but now we have just gotten used to them and will treat most of them at home. These infections spread easily in clinical settings, so Aloshua is always on contact precautions when hospitalized (visitors and staff have to wear masks, gowns and gloves while in his room).

Failure to Thrive / Failing to gain weight and progress under current circumstances. When you are 11 pounds at a year old then you are Severely FTT. Aloshua is considered FTT because, despite medical interventions, he does not gain weight normally.

IPV Intrapulmonary Percussion Ventilation / A respiratory treatment machine that percusses/vibrates the lungs and breaks up junk inside them

Pulse Oximeter / Small machine that measures the amount of oxygen in a persons blood – AKA a small machine that randomly beeps quite annoyingly for no reason other than a simple movement from said person being monitored

Suction Machine / A machine used to "suction" mucus from the airways. Because Aloshua cannot get rid of the mucus on his own, we have to put a small "cath" down his trach and suction out the junk so he can breathe. Without regular suctioning, the mucus plugs his trach off and prevents him from breathing. 

Medical Code (BLUE) / A really really really bad thing to hear said about your child. Means they have “coded” and stopped breathing or their heart has stopped and they require resuscitation

Respiratory Distress / Along the lines of a code but not as severe.. Usually shown by the lack of oxygen in a persons blood, labored breathing, increased heart rate.. Though while it is not as severe as a code, it is still bad

Immunocompromised / A simple cold isnt so simple when you are immunocompromised. A simple cold could mean a really long hospital stay. The immune system isnt what its supposed to be. Immunocompromised people are more susceptible to everyday germs

Pseudomonas / Stinky infection.. Typical bacteria found commonly in drinking water, but reeks and causes total chaos with chronic kids. The infection is considered "medically complicated" and can cause sepsis or death in humans and animals. Treatment may last the course of a lifetime for medically compromised patients.

Tobramycin / Really freaking expensive medication that is inhaled via a nebulizer to treat a pseudomonas infection of the lungs - $4,500 for a 28 day supply

RSV Respiratory syncytial virus / Basically just a common cold which isnt so common in immunocompromised kids.. RSV is a respiratory virus and not a pretty thing for medically fragile kiddos. A shot called "Synagis” helps to lessen the effects of RSV (DOES NOT PREVENT IT) but once a child reaches 2 they are no longer offered it without one heck of a fight and usually only get it for one additional year simply because research has not been done showing that it works for kids over the age of 2.. Granted MOST kids over the age of 2 can handle a simple cold.. Chronic kids/immunocompromised kids cant and often end up in the hospital on heavy ventilation because of RSV.

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