Here are my medical definitions, adding some detail from my experiences.
As carers and parents of children with medical conditions and disabilities we learn lots of new terminology. We don’t always catch the meaning the first time we hear them.
A sudden or severe episode/illness that comes out of nowhere. I often said that Matthew could be fine, then within 30 minutes it was clear he could have a life threatening infection of some kind.
Adrenal Crisis –
Caused by insufficient levels of the hormones cortisol, potentially life-threatening.
Matthew has a friend with no pituitary gland.
She can have an adrenal crisis if not enough of the hormone cortisol is produced. Cortisol, also known as steroid, adrenaline, is the hormone for life. It’s not only the fight and flight hormone. We rely on it to keep us alive. It plays various roles within the body including maintaining blood pressure, cardiovascular function, regulating blood sugar levels.
If the cortisol levels aren’t managed well, or quick enough, when the body is under stress, an adrenal crisis will occur. If not treated she can become unconscious and go into shock. It’s very similar to when a diabetic has hypoglycemia.
Referring to a normal body temperature or ‘no temperature’ – anything between 35.5 and 38.5. C. Close monitoring of Matthew showed me that he had his own normal. Anything over 36.5 was concerning to me. Or below 35.
Sedation and pain blocking used for surgeries and other procedures where the patient needs to be perfectly still, or would be too painful to endure otherwise.
Not being able to talk.
Laxatives. Really confused me when the doctor used this word. I asked him to clarify the definition. To make sure we weren’t talking about something else.
Microscopic germs that may respond to antibiotics. They can however be useful bacteria.
Barium Study –
Radioactive dye swallowed, either in drips or added to a feed, monitored via a fluoroscopy – or video x-ray.
This can be done to look for aspiration or how the swallow process is happening and if it is safe. It can also be used to diagnose reflux – as in Matthew’s case – or to monitor the emptying of the stomach and digestive system.
Sample of tissue. Taken for lots of things, cancer testing, genetic testing, metabolic testing, inflammation testing. Matthew had skin and bowel biopsies. All minor and with pain killers.
Bleach baths –
Bathing in a water/bleach mix to kill bacteria. Some eczema treatments are done this way. Matthew had bleach baths for peri-orbital cellulitis – a staph infection around his eyes. Also his PEG.
Boots and bars –
Orthotics for treatment of club feet, which a boots fastened to a bar to hold the feet at the specific angle required to maintain the required correction.
Low heart rate. Matthew’s was caused by the failure of his brain stem. It can be effected by lots of things, like medications.
Is a common viral chest infection in babies and infants. It can turn into pneumonia. Matthew’s first admission was for bronchiolitis, which then developed into pneumonia, requiring intubation. Bronchiolitis is inflammation and mucus building up which makes it difficult to breath.
Capillary Blood Sample –
Blood taken from a vein, maybe just a finger or toe prick.
Doctor specialising in the heart.
A soft hollow tube.
Often associated with urinary sample or urinary bags. Can be used for lots of different things.
An infection of the skin usually caused by staphylococcus.
Central Apnea –
Slowing or stopping of breathing caused by the brain, brain stem or messages getting disrupted. Matthew’s central apnea continued to get worse until he passed away. No telling which specific symptom was the last straw.
An illness that persists for a long time, or constantly recurs. The first time we heard the word chronic the respiratory specialist said ‘because of his chronic lung disease.’ I had to stop her and say ‘you’re just giving a label to what we already know, not telling me he has something new, correct?’ Which she confirmed. Matthew had constantly recurring lung infections.
A birth defect where one or both feet are rotated inwards, can even look like it’s upside down, like Matthew’s. Can affect one or both feet. Otherwise known as: congenital talipes equinovarus, treatment is normally the ponseti method, followed by a tenotomy. Often club foot is not related to any other issues or conditions.
Code Grey –
At the Royal Children’s hospital Melbourne a code grey is a security incident requiring assistance. Can be called for a variety of reasons, most commonly parents getting upset about the level of care being provided to their child. I have also heard it being called on over aggressive doctors clashing with parents. Never happened to me either way.
Inflammation of the lining of the eye and eyelids. Common in little people. Matthew had persistent conjunctivitis caused by blocked tear ducts. He had them surgically cleared once on one side and twice on the other. They believed it was because of the way his nose was shaped, due to his genetics.
Passing or difficulty passing, dry hard stools. Infrequent. Normally easily addressed. Matthew’s hypotonia and other issues meant that his stool had to be almost watery to move at all. He had to be constantly on laxatives from the moment he stopped having breast milk.
Easily transmitted disease.
Continuous Positive Airway Pressure (CPAP) –
A machine that blows air into your nose and/or nose via a mask to assist in inflating your lungs when you take a breath. It does not force breathing but makes breathing easier. Matthew had CPAP for treatment of central apnea and obstructive sleep apnea, partly cause by brain, partly caused by his low muscle tone.
Turning or appearing blue, usually caused by lack of oxygen or oxygenated blood to your body. Matthew often suddenly appeared cyanosed. He then needed lots of oxygen and sometimes pressure support such as CPAP, BiPAP and in the worst cases ventilation.
Denis Browne Bar –
The harness for treatment of hip dysplasia.
Issues swallowing, sucking, drinking, chewing, dribbling saliva, or when food or drink goes down the wrong way. Matthew was born with this. His first speech therapist called it ‘an uncoordinated suck’.
ECG (Electrocardiogram) –
Measuring electrical activity in the heart.
EEG (Electroencephalogram) –
Testing electrical activity related to the brain. Some hearing tests are conducted with EEG. Normally only used for babies, Matthew was only ever able to have his hearing tested this way.
A procedure used to let the doctor look inside your body. An endoscope is a camera on a flexible tube. Matthew had an endoscopy to examine the insides of his digestive system. Bowel, oesophagus, stomach etc.
Substance injected into the rectum to clear obstruction or give medications or enable proper imaging.
Eye Infection –
Infection in the eye area. Matthew had treatment including bleach baths for peri-orbital cellulitis – a staph infection around his eyes
Having an above ‘normal’ temperature, normally over 39 degrees.
Short for influenza
Doctor specialising in the digestive system. In my experience it can be quite difficult with their funding model and availability to find one that we could work with and who would be consistent enough to get to know Matthew.
The study of our DNA, genome or genetics, or what we are made up of, or the department specialising in that study.
Golden Staph –
Staphylococcus aureus a common bacteria. Most people have it on their skin. When it enters the body it can cause an infection.
GORD (Gastro Oesphageal Reflux Disease) –
Reflux. Probably a permanent problem. But can respond to some diet changes and medications. Children and other like Matthew who aspirate easily, may need surgical intervention, like a Nissan fundoplication to prevent the reflux entering their lungs.
Little tubes put into your ears to assist with fluid drainage and improve hearing. Very important for children, as loss of hearing can effect language and communication development. Matthew had his put in due to many respiratory infections causing build-up of fluid in his ears.
Hip Dysplasia –
Hip socket doesn’t completely cover the ball of the thigh bone. Can be partly or totally dislocated. Some babies are born with it. Similar in nature to club foot. Children with club foot are examined closely for hip dysplasia.
The effect of foreign organisms on the body. Infections can be caused by many different types of organisms, most common, viral and bacterial.
A device put under the skin to deliver medications directly to the patients’ bloodstream. Matthew had one put in due to how often he was needing IV medications. Also because of the level of distress that the process of inserting an IV caused him.
While there is a whole new set of infection risks, Matthew never had an infection in the port or the line. We loved it, Matthew hardly noticed when the port was accessed. A needle is inserted through the skin covering the port, into the port to access it.
Infusor Pump –
Or syringe driver for continuous subcutaneous infusion. We had a battery operated one twice in the final 4 months.
It is awesome invention. Much less bulky that the regular IV pump. Can be set up for 24 hours. Tucked into a bag and carried about, very unnoticeable.
Matthew’s palliative care meds were all put through this. We only stopped using it after he had passed away. It brought him and us an enormous amount of peace.
Into the muscle. Most immunisations are intramuscular.
Into a vein. Lots of medications and antibiotics are administered this way.
Used for the treatment of constipation. Can be stool softeners or bowel stimulants. Different cases need different laxatives. Also known as Aperients.
Low muscle tone –
Also known as hypotonia. Can be caused by something genetic or metabolic, or neurological. Massive scale in how much someone is effected. Matthew’s hypotonia was the reason why he got so many chest infections and couldn’t recover very well. Same probably for constipation.
MET (Medical Emergency Team) –
The name of the team at the Royal Children’s Hospital that respond in emergencies. Also known as a code blue.
Misshapen Head –
Some babies have flat spots from lying on one side consistently. Only children with no other issues normally receive treatment for this. It is almost completely cosmetic in most causes. Matthew’s was never treated as he started treatment for clubfoot at 1 week old. It was decided that treatment for his head would be mean an unnecessary.
MRSA (Methicillin-resistant staphylococcus aureus)
This is the staph that Matthew had, tougher to treat because it is resistant to most antibiotics. It can be known as a super bug, because it has adapted, possibly in the hospital setting. Some patients who have been diagnosed with a MRSA infection, as considered to always have the infection and extra precautions are always taken to prevent the spread. Matthew had it in his PEG, lungs, tear ducts and skin. Almost 100% because the hospital put it there accidently.
Multidisciplinary meetings –
Team meetings of the different specialist’s involved in the patients care.
I really appreciated these meetings, but they can be very intimidating for a carer. Especially when in the end you are the final say in many decisions.
Nasogastric tube –
A tube inserted via the nose into the stomach.
Feeling sick in the stomach, often feeling like vomiting, dizziness, sometimes improves with vomiting. Actually controlled by the brain not the stomach.
A doctor specialising in the brain.
A specialist in nutrition, different qualifications than a dietitian. Both have more training that a doctor in nutrition.
Obstructive sleep apnoea –
Apnea (slowing or stopping of breathing) caused while sleeping by the physical closing off of the airway. Snoring is often sleep apnea. Mostly harmless, but if your body is being deprived of oxygen you may need something like CPAP while you sleep.
Occupational Therapy (OT) –
Specialist on function. Helping you do every day normal things. Giving you the best chance to access the world around you, without harm to yourself or carers. OT’s are legends, their jobs span a huge variety of areas. Specialist equipment like wheelchairs and lifts are assessed and prescribed by OTs.
Operating room –
Room which surgeries and procedures under sterile and sedated conditions are performed.
Orthpeadic Surgery –
Surgery involving the structure of the human body, bones, muscles and the like. Matthew had an orthopaedic surgeon over seeing his club foot treatment, he performed a tenotomy on both legs.
Doctors who have studied a long time after finishing their initial training to specialise in the care of children. Matthew’s life-long paediatrician chose to take him on after his first admission to RCH, he was simply on rounds during that time. We were very blessed.
Palliative Care –
End of life, or preparation for passing away care. For people with life limiting conditions. Their focus can be simply to make the patient comfortable or to help them get every last thing out of life before they are done.
Care of children.
The specialist who knows as much as one can know about medications. More likely to pick up non-compatible medications, suggest a more suitable medication that does the same thing. Like a reflux medication that is better designed to go down a PEG tube.
Specialising in movement, with your muscles, tendons ligaments. Treatments can be things like exercise, stretching, massage, acupuncture. They can specialise in different areas, sports, paediatrics, chest physio.
PICU (Peadatric Intensive Care Unit)-
Intensive care, for children older than 6 weeks.
An infection in your lungs, normally bacterial. Viral infections, can be simply known as a chest infection rather than being called pneumonia. Not that it looks different, just that the treatment options are different.
Pulse/Heart rate –
How fast your heart is beating.
Specialist who takes pictures of the body using radiation. Things like ultrasound, x-ray, barium swallow, fluoroscopy are all done by a radiologist I believe.
Recovery room –
Often used after a surgical or other procedure when anaesthetic is used. Time to make sure the patient is stable before being moved on. Could be a ward, home, or rehab of some kind.
Stomach contents or acid wash back up towards your mouth through your oesophagus.
Respiratory infection –
Infection affecting your breathing systems, nose, mouth, throat etc.
Using medications to settle and relax someone. To make the procedure less confronting or the patient less able to react. Depending on the reason for it.
Skin infection –
Infection affecting the skin.
Sp02 or Oxygen Saturation (sats) –
The amount of oxygen in your blood, as monitored by a little red light, often taken via a finger or toe.
Speech therapist –
Someone who specialises in using your mouth. Can be experts in swallowing, eating, alternate communication, as well as actual speech.
Staphylococcus aureus a comment bacteria. Most people have it on their skin. When it enters the body it can cause an infection. There are different types of staphylococcal.
Just under the skin. Some medications and immunisations are administered subcutaneously. Can be very useful if the stomach has stopped tolerating anything in it. Or you just need more access to the body.
A set of medical signs and symptoms which are not necessarily linked directly, which are associated with a particular disease or disorder.
Fast pulse or heart rate.
Involves the division of a tendon. Also referred to as a tendon release, or lengthening. When it involves the Achilles, which Matthew’s did, It is called “achillotenotomy”.
When an opening is made in your throat and airway to allow breathing directly in and out through a tube and no your mouth or nose.
Moving between something. Maybe specialists. Or life stages or more commonly care as a paediatric patient to the adult health system.
Undescended testes –
When the testes are not in the scrotum. Or the balls are not in the ball sack. Concerns are for things like infertility, cancer and other complications.
Matthew’s was picked up by a doctor training to be a paediatrician. When this information was passed to his regular team, they nearly jumped out of their seats to check, as they couldn’t believe they had missed it. It requires a procedure called an orchidopexy.
Upper respiratory tract infection –
Something like a cold and fly virus, but can also be bacterial. Sometimes referred to as a ‘URTI.’
It took me a good couple of years to realise that ‘Urti’ was actually a technical term for virus not effecting you lungs and chest. I thought it was like a nickname.
Viral illness –
An illness not caused by bacteria, will NOT respond to antibiotics. Treatment is mostly wait and watch.
Whooping cough –
A dreadful, contagious coughing illness, with no treatment, often fatal for babies and people with low immune systems like Matthew.
A few times we waited with baited breath to hear if he had caught it.
I couldn’t include everything and somethings I haven’t come across myself. I started with the medical definitions from the RCH website.
My dear friend Kat Barlow likened it to going to space, meeting with aliens and learning their language.
If you know a medical definition that is misunderstood, or professionals use without explanation, please share with us!