Parish Larkspurs

http://www.gardengates.info/Larkspur.JPG

Delphinium parishii. A rare purple flower found in desert scrub.

Lightning Storm

Since it's such an important stimulus for Alex (and Lia), I thought I'd post a lightning storm set in the Southwest United States. Enjoy.

http://www.youtube.com/watch?v=blwSIUzlN9o

Feeding Tubes

For Lia and younger and older Alex

Caretaking & Feeding Tubage

http://www.oralcancerfoundation.org/dental/tube_feeding.htm

Important excerpts from the above article

Ø When not in use, they can simple be taped to the patients stomach to prevent them from moving around under clothing.

Ø About three inches of tubing will protrude from the incision area. Initially, there may be some discomfort while getting used to using the system, from gas or air, or from adjusting to the liquid foods themselves.

Ø Greater care is required during the first week the tube is in place, as the surgery has just been performed. The area around the wound must be kept thoroughly clean and covered with clean, gauze. During this period of time the tube may occasionally pull away from the abdominal wall, resulting in leakage around the insertion site. Leakage may also occur if the stoma site becomes enlarged. Excessive tension may cause the tube to be pulled out prematurely.

Ø The tube is very narrow, and commercial tube feeding formulas such as Ensure, are designed so that they will not clog the tube; they are not too thick and do not leave a residue. Most formulas are designed to have water added to them to ensure that the patient is receiving enough dietary water, and to further thin the formula for ease of use. To maintain patency, the patient should flush the tube with clear water before and after feedings, or after medications have been administered through the tube. The placement of noncommercial formulas or foods into the tube is highly discouraged, as there is a greater likelihood that they will contribute to clogging. After the tube is placed, a registered dietitian or a nurse who specializes in nutrition should assess the patient to determine their nutritional needs, the amount of calories, protein, and fluids that will be necessary, as well as the most appropriate nutritional formula and how much of that formula will be needed each day. Nutritional products designed for tube feeding are formulated to provide all the nutrients the patient will need including proteins, carbohydrates, vitamins, and minerals. Some even contain dietary fiber and other non-nutritional elements.

Ø When feeding the patient, it is imperative that the caregiver or patient thoroughly washes their hands with soap and water before preparing formula or having contact with the PEG system. The patient should be upright, no less than thirty degrees, to minimize the risk of regurgitation and aspiration, and they should be kept upright for thirty to sixty minutes after feeding. To prevent complications (abdominal cramping, nausea and vomiting, gastric distension, diarrhea, aspiration), food should be infused slowly. It may take more than an hour to administer one feeding session, as the drip mechanism is kept at very slow settings.

Ø Using an attached bag system to contain the liquid diet for feeding is a secondary method by which food is allowed to drip slowly into the tube though “gravity feeding.” With this technique, there is greater freedom in that feedings can be done anywhere, at any interval, and medications may be administered through the PEG tube utilizing this method.

Ø Scrupulous oral care is imperative in preventing problems, and must be attended to frequently, especially in patients who are provided with total nutritional support through the PEG tube. Daily brushing of the patient's teeth, gums and tongue must be performed. The patient's lips should be routinely moistened, and if necessary, lubricated with petroleum jelly to prevent cracking. The incision area must be observed daily for redness, swelling, necrosis or purulent drainage, and the skin must also be cleaned daily. It helps to routinely apply an antibacterial ointment to the insertion site after cleaning to prevent infections such as Neosporin.

Ø The lifespan of the feeding tube is about six months. [BRETT note: This varies. Other resources put tube life as two-three years without replacement. Keep in mind.] When the tubing begins to wear, it may pull away from the stomach wall and cause leakage near the insertion point. The replacement process is relatively simple, and usually does not involve another endoscopic procedure. Typically, the tubing is merely pulled out through the stomach site and then replaced with a new catheter.

Rock Art

Here are some great places to start to get an idea of what kind of work Alex would most likely be doing in the desert.

http://www.singingdesert.com/

http://ludb.clui.org/ex/i/TX3233/

http://www.petroglyphs.us/ …JEFF: this one is especially good for you

Glossary

We will keep adding to this as needed, but below is a guide toward understanding some of the foreign phrases you may come across from here on out:

Feeding Tube: A flexible tube that is inserted through the pharynx or abdomen through which liquid food is passed to the stomach. [For more information, please refer to post on Feeding Tubes]

Bulkhead (p5): One of the upright partitions dividing a vehicle, such as a subway, into compartments and serving to add structural rigidity and to prevent the spread of leakage or fire.

Scrub (p13): A group of small trees and shrubs, often found in arid areas.

Easel Painting (p25/26): A method of painting using a panel or canvas.

Land Art (p25/26): A style of art which manipulates existing natural formations to create artistic works

Asphyxiation (p27): to cause to die or lose consciousness by impairing normal breathing, as by gas or other noxious agents; choke; suffocate; smother.

Persistent Vegetative State (p28): [http://healthlink.mcw.edu/article/921394859.html] Can follow a coma; a condition in which individuals have lost cognitive neurological function and awareness of the environment but retain noncognitive function and a perserved sleep-wake cycle. It is sometimes described as when a person is technically alive, but his/her brain is dead. However, that description is not completely accurate. In persistent vegetative state the individual loses the higher cerebral powers of the brain, but the functions of the brainstem, such as respiration (breathing) and circulation, remain relatively intact. Spontaneous movements may occur and the eyes may open in response to external stimuli, but the patient does not speak or obey commands. Patients in a vegetative state may appear somewhat normal. They may occasionally grimace, cry, or laugh.

CAT (computerized axial tomography) scan (p28): A special type of body scan which creates a multi-layered, sometimes three-dimensional image of internal organs and functions. They are often used to locate tumors, cysts, infections, or to gauge injuries sustained from trauma. For stroke victims, they are one of the first tests done after a stroke and are used to determine where hemorrhaging in the brain has occurred (which will then help to understand what kind of stroke it is, what areas of the brain will continue to function, etc.). The test is painless and uses very little x-ray radiation.

Larkspur (a.k.a. Parish Larkspur) (p35): Delphinium parishii. A rare purple flower found in desert scrub (see Images posting)

Barrel Cactus (p35): Ferocactus. A cylindrically-shaped cactus with sharp heavy spikes and flowers coming out the top. There are many different types of barrel cacti, but most grow on desert slopes and under desert canyon walls. For more information, click here: http://www.desertusa.com/mag99/june/papr/barrelcactus.html

Jumping Cholla (p35): Opuntia bigelovii. A spined plant which grows in desert valleys. It gets its name from the ease at which the spines detach themselves from the plant (this is primarily how the plant reproduces. For more information, click here: http://www.blueplanetbiomes.org/jumping_cholla.htm

Fairy Duster (p35): Calliandra eriophylla. A desert flower with thin spindles protruding around a darker center. Go here for more information: http://www.desertusa.com/june96/du_far.html

Indian Paintbrush (p35): Castilleja miniata. The state flower of Wyoming. A very resilient flower which grows in many different types of climates, but requires a bit more precipitation than the average desert. Some very interesting information about the Paintbrush can be found here: http://www.intangibility.com/inw/Wildflowers/Indian-Paintbrush.html

Navajo Tea (p36): Thelesperma simplicifolium. Navajo Tea is an upright perennial that can be found in calcareous soils of the Edwards Plateau. It grows from 1 to 2 1/2 feet tall with threadlike leaves that are 1 to 3 inches long. The flower head consists of eight yellow ray flowers and numerous yellow disk flowers. Navajo Tea blooms from May to November. [http://uvalde.tamu.edu/herbarium/thsi.htm]

Paloverde (p36): A shrub/small tree, with thin, green exterior & yellow flowers. A very useful tree in the ecosystem, and generally found on lower mountain slopes in the Arizona side of the Sonoran Desert. For more info, go here: http://www.blueplanetbiomes.org/palo_verde.htm

Apache Plume (p36): Fallugia paradoxa. A shrub found in all deserts of the southwestern United States; has round white flowers with a yellow center. More info can be found here: http://www.desertusa.com/mag98/aug/papr/du_aplume.html

Joshua Tree (p36): Yucca brevifolia. A type of Yucca tree that grows only in the Mojave Desert, in dry soil on many different elevations, often in groves. For more information, go here: http://www.desertusa.com/jtree/josh_month.html

Night-Blooming Cereus (p36): Peniocereus greggii. One of the strangest plants of the desert, the Night-blooming Cereus is a member of the Cactus Family that resembles nothing more than a dead bush most of the year. It is rarely seen in the wild because of its inconspicuousness. But for one midsummer's night each year, its exquisitely scented flower opens as night falls, then closes forever with the first rays of the morning sun. [lifted from DesertUSA... http://www.desertusa.com/mag99/july/papr/nbcereus.html]

Desert Mariposa (p36): Calochortus kennedyi. A yellow, orange, or red bowl-shaped flower which usually grows only a few inches off the ground and in heavy soil in the Mojave and Sonoran deserts. For more information, see here: http://www.desertusa.com/mag98/july/papr/du_marlily.html

Brown-eyed Evening Primrose (p37): Camissonia claviformis. A member of the evening primrose family, has white-off white flowers and is quite prevalent in hot flat areas (such as Death Valley and the Sonoran desert). Visit here for photos & more information: http://cabezaprieta.org/plant_page.php?id=1412

Sacred Datura (p37): http://www.angelfire.com/indie/anna_jones1/datura.html
http://cals.arizona.edu/yavapai/anr/hort/byg/archive/sacreddatura.html

Hawkmoth (p37): http://waynesword.palomar.edu/manduca2.htm

Sweetbush (p38): http://www.calflora.net/bloomingplants/sweetbush.html
http://www.fireflyforest.com/flowers/yellows/yellow61.html

Brittlebrush (p38): http://www.desertusa.com/april96/du_britbush.html
http://www.blueplanetbiomes.org/brittle_bush.htm

Scarlet Four o'clock (p38): http://www.nazflora.org/Nyctaginaceae.htm
http://en.wikipedia.org/wiki/Scarlet_four-o'clock

Love-Lies-Bleeding (p38): http://www.ces.ncsu.edu/depts/hort/consumer/factsheets/annuals/loveliesbleeding.html
http://en.wikipedia.org/wiki/Amaranthus_caudatus

Amaranthus (p39): http://en.wikipedia.org/wiki/Amaranth
http://plants.usda.gov/java/profile?symbol=AMRE

Polyethylene (p42): a plastic polymer of ethylene used chiefly for containers, electrical insulation, and packaging.

Sharp-shinned Hawk (p54): http://www.birds.cornell.edu/AllAboutBirds/BirdGuide/Sharp-shinned_Hawk.html
http://www.birds.cornell.edu/pfw/AboutBirdsandFeeding/accipiterIDtable.htm

Cactus Wren (p55): http://en.wikipedia.org/wiki/Cactus_Wren
http://www.mbr-pwrc.usgs.gov/id/framlst/i7130id.html

Ocher (p62): the color of any of a class of natural earths, mixtures of hydrated oxide of iron with various earthy materials, ranging in color from pale yellow to orange and red, and used as pigments.

Amber (p62): the yellowish-brown color of resin

Burnt brick (p62): a dark red/black/brown mixture.

Lampblack (p62): a fine black pigment consisting of almost pure carbon collected as soot from the smoke of burning oil, gas, etc.

Gravlax (p66): boned salmon, cured by marinating in sugar, salt, pepper, and other spices, esp. dill, served as an appetizer.

M'illumino d'immenso (p67): http://www.m-illumino.com/ThePoem.htm

Acrylic (p80): a paint, prepared esp. for artists, in which an acrylic resin serves as a vehicle. http://en.wikipedia.org/wiki/Acrylic_paint

Masonite (p80): a type of fiberboard.
http://bansemer-paintings.blogspot.com/2006/09/using-masonite-for-painting.html

Tidal Volume (p82): The volume of air inhaled and exhaled at each breath.

Cheyne-Stokes respiration (p82): http://www.whonamedit.com/synd.cfm/1159.html
http://en.wikipedia.org/wiki/Cheyne-Stokes_respiration

Cyanosis (p82): http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/cyanosis.jsp
http://en.wikipedia.org/wiki/Cyanosis

Somnolence (p82): A state of drowsiness; sleepiness.

Muscle Flaccidity (p83): A diminution of the skeletal muscle tone marked by a diminished resistance to passive stretching.

Bradycardia (p83): a slow heartbeat rate, usually less than 60 beats per minute.

Hypotension (p83): decreased or lowered blood pressure.



(Many thanks to our friends at dictionary.com, as well as other websites across the internet, for this useful information!)

From the Files of Nurse Maureen Adduci

Maureen, our resident medical expert, kindly took some time to give us some background information on strokes and her perspective of Alex's condition.
Thanks Maureen!

----------------------------------------------------------------------------------

Okay, a little medical discussion. (Keep in mind I spent most of my life in surgery but have spent time with CVA's (cerebral vascular accidents).)

The biggest thing to realize is that the range of injury is incredibly wide. My take on Alex is [he suffers a ] pretty big first one with some recovery and then the catastrophic one. I think the loss of speech is the toughest. It's called aphasia and it has two forms. Patient can't understand what's being said to them or can't remember the words needed to express themselves (very common in a lot of different brain injuries); sometimes you see both. You can recover from this with a lot of therapy. Motor skills are very specific.....frequently paralyzed on one side and that can be limited recovery even with a lot of therapy.

One of the most distinctive things with stroke patients is their inability to control their upper airway so they tend to choke, drool and have great difficulty speaking. This is beyond the cognitive aspect of aphasia: it's motor skills. Think Dick Clark or Kurt Douglas.

As for "catatonic" (which is not a word I would use; I always associated that with psychiatric conditions), it's all different but I'm going to presume to be diagnosing Alex. If there is movement (and in his case there seems to be), it is involuntary nerve transmissions. The moaning.....well, that can be considered involuntary but can be a result of pain or something else. As the brain suffers these injuries it dies in spots. So you lose all different things. Certain areas hold certain capabilities, including the last/worst: ventilation (breath control).

About Love-Lies-Bleeding

In case any of you were interested in a little more background behind Don Delillo and his perspective on this play, I’ve included some helpful links below. Enjoy!

An interview with Don Delillo for the Steppenwolf production

http://www.steppenwolf.org/backstage/article.aspx?id=130

“DD: I suppose the one thing I ought to say about this play in particular is that it’s an attempt to explore the modern meaning of life’s end. When does life end? When should it end? How should it end? What is the value of life and how do we measure it? The play isn’t meant to answer these questions, but simply to fl oat in the space between them. And I could never have said any of this while working on the play or even shortly afterward. But over time, certain things become a little clearer.

ML: You know I was suddenly just thinking a lot about the play. It’s interesting because there’s a remove on the surface of the play, but I find myself strangely moved by it precisely because of what you’re saying now—this awful responsibility that we now have and the great wisdom it’s going to ask of us to make decisions about when life ends.

DD: We have to make decisions that people didn’t have to make unless they were doctors.

ML: It’s awesome.

DD: It is. This is what you will convey when you walk out on the stage that first night—the awesomeness of it.

ML: Yeah, I hope so.

DD: So wear comfortable shoes.”

The voice of Mr. Delillo, in case any of you were wondering

http://perival.com/delillo/lovelies_delillo_clip.mp3

A 2006 interview with Don Delillo for Melbourne’s The Age

http://www.theage.com.au/news/books/around-societys-edges/2006/02/21/1140284064551.html

Steppenwolf’s LLB homepage

http://www.steppenwolf.org/backstage/history/productions/index.aspx?id=339