At this point in time, the MIC-KEY is not my only way to receive nutrition. The purpose of having the feeding tube surgically inserted now is this: While I can still eat via mouth, it allows me time to adjust and become accustomed to using the MIC-KEY for caloric intake as well as staying sufficiently hydrated. My water consumption isn’t what it should be because swallowing thin liquids isn’t easy. Even though I’m still able to eat, it is an arduous endeavor. It takes far longer to chew my food than pre-ALS. I can’t handle soup with mixed textures, mac and cheese, pasta salad, or an In-N-Out burger. Too bad for me but more for you! Well, not all of you. I realize the vegetarians among us won’t be looking for an In-N-Out burger; although, I do know vegetarians who order ‘the works’ minus the beef, and love it! And my vegan friends won’t miss mac and cheese. My soup must be puréed to one smooth consistency. Same applies to mac and cheese. Haven’t tried that with an In-N-Out burger nor do I plan to.

A Nostalgic Trip Down Memory Lane
My dad would be happy to hear this. Loading us in his trusty Volkswagen bus, he loved taking us to one of the original In-N-Out drive-throughs in Pasadena on East Foothill Boulevard. That was way before In-N-Out started adding dining rooms. All the original In-N-Outs were strictly drive-throughs. To this day, their location on East Foothill Boulevard still is drive-through only! My dad would be aghast if he saw his daughter put one of those tasty burgers in her blender and . . . you would probably look the other way, too!

When solids (e.g., carrots, celery, potatoes, zucchini, olives, etc.) separate from liquids in my mouth and head for the back of my throat prematurely, that poses a serious choking hazard. It takes a lot of concentration and focus just to eat. No distractions! Evenings are the most difficult because I’m already tired from the day—resulting in even greater fatigue from chewing and swallowing. What used to take me 10 minutes to consume easily turns into 45 minutes. By the time I finish . . . if I finish . . . I’m completely worn out and may not have consumed enough calories.

So far, I haven’t used my MIC-KEY. Here’s why: At UCSF, the procedure for surgically inserting a feeding tube mandates a standard overnight stay in the hospital. That hospital sends patients home with a “starter kit” including hoses, syringes, connecter extenders, liquid food, etc. UCSF assumed this to be the protocol followed by French Hospital. Nope. French utilizes outpatient day surgery for feeding tube placements. I was discharged Thursday afternoon with zero supplies. The UCSF registered dietician and my amazing home health RNs have scrambled unbelievably to get me what I need; but due to proliferation of the not-so-helpful-nor-exciting game of phone tag, there have been numerous snags delaying deliveries. Add the Thanksgiving extended weekend . . . Good thing I’m still able to get nutrition via my mouth! Today we received a couple of supply deliveries with more en route. We anticipate beginning tube feeding instructional training tomorrow (Wednesday, November 27).

HAVE A SPECIAL THANKSGIVING!

Sailed through the placement of a G-feeding tube. Based on first-hand participation, Thursday was pretty much a textbook example of a G-tube surgical procedure. Our daughter, Kathryn, left San Francisco early Thursday morning to drive to the hospital. She arrived shortly after we were taken to pre-op day surgery. I changed into the typical over-size hospital gown. The anesthesiologist met with us to discuss his plan—he would remain in the operating room (OR) on standby in the event he needed to administer anesthesia. Finally, the young, female, interventional radiologist carefully reviewed the procedure while allowing time for questions. I inquired about a MIC-KEY* (see below). Typically, a MIC-KEY is inserted several weeks post-op. The interventional radiologist said it was her intention, if possible, to insert a MIC-KEY during Thursday’s procedure. Success would be dependent on the thickness of my stomach wall and what size MIC-KEYs were available—they come in many sizes but not all are stocked in the French Hospital OR.

MIC-KEY* 
Our MIC-KEY* Low-Profile Gastrostomy Feeding Tube is a step up from a standard gastrostomy feeding tube. When designing it, we listened to many enteral feeding consumers who requested a tube that would allow for an active and more mobile lifestyle. They told us it should be unobtrusive, easy to conceal under clothing and difficult to dislodge allowing freer movement.

Today, MIC-KEY* is the more mobile person’s ideal feeding tube choice. MIC-KEY* allows both children and adults to enjoy life to the fullest while ensuring their nutritional health and well-being.

An attendant wheeled my bed to the brightly lit operating room where I would spend the next hour. I was prepped for the procedure. They allowed me to have a pillow under my head to help me breathe easier while in the supine position. Throughout the entire operation, I was fully awake and alert but felt no pain as lidocaine was used to numb my abdomen. It was interesting and eye opening to listen to conversations among the surgical team throughout the procedure. During the final 15 minutes, the interventional radiologist said she was pleased she would be able to install the MIC-KEY as she had the exact size required!

Wheeled back to day surgery post-op to meet up with Jon and Kathryn, I was discharged just after 4:30 p.m. and back home within a half hour. There was considerable pain Thursday night and Friday, but that has become less intense throughout the day. We have been managing my pain with Tylenol and Advil, as needed.

Friday we benefited from the visit of a home health nurse. We are awaiting a delivery of supplies including liquid nutrition. This afternoon we were grateful for a second visit from a nurse on our home health team.

Thank you, each one, for your
prayers and words of encouragement!

A Young Girl’s Dream

My love affair with not just any hound—bloodhounds—started as a young, impressionable girl growing up in Sierra Madre. The small, charming community in southern California nestled beneath the San Gabriel Mountains is flanked by Pasadena on the west and Arcadia to the east. Every Fourth of July, the town hosted a festive parade on Sierra Madre Boulevard. Bloodhounds were always accompanied by the Sierra Madre Search & Rescue Team (SMSR). The high point for me!

While enrolled in third grade at Sierra Madre Elementary School, two classmates’ fathers served as volunteers with SMSR. One momentous day, both of those dads visited our classroom, magnificent bloodhound in tow. The men told us real stories involving their perilous work looking for missing hikers in the local mountains. Cell phones, GPS, and satellite communication weren’t even on the radar in the late 1950s. Bloodhounds, however, have been around for a very long time.

A concerned mother would call the police (no 911 dispatch in those days!) when her son and his friends failed to return home as anticipated from a day hike in the mountains. The SMSR would be deployed to search for the missing boys. A boy’s dirty sock, baseball hat, or other unlaundered piece of clothing could serve as a scent article—something having direct contact with the skin. Every person is created with a unique scent. No two alike. The handler strapped on the bloodhound’s work harness, simultaneously sending a message to the hound saying, “We’re going to work!” At the place the boy was last seen, the handler presented the scent article to the bloodhound. Once the hound connected the scent on the article with the matching scent on the ground, the bloodhound immediately shifted from neutral into high gear and instinctively began hunting for the lost boy. Amazing! It’s just a fun game to the bloodhound. For humans, it can mean the difference between being lost or found. Perhaps life or death.

Continue reading “What’s with Hound by the Sea anyway?”

Adapted from:

ALS Association Golden West Chapter
Health Communities
Mayo Clinic

Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease, is a progressive neuromuscular disease that weakens and eventually destroys motor neurons— components of the nervous system that connect the brain with the skeletal muscles.

Upper motor neurons are located in the cerebral cortex of the brain and conduct impulses from the motor cortex to nerves in the brain or the spinal cord. Lower motor neurons are peripheral neurons that originate in the spinal cord and conduct impulses to the skeletal muscles. Skeletal muscles are involved with voluntary movements, such as walking and talking. The lower motor neurons transmit the command to move from the brain to the skeletal muscles, which respond by contracting.

A person with ALS usually presents with problems in dexterity or gait resulting from muscle weakness, or with difficulty speaking or swallowing. Sphincter control, sensory function, intellectual ability, and skin integrity are preserved. Patients become paralyzed and often require ventilation and surgery to provide a new opening in the stomach (gastrostomy). Loss of respiratory function is ultimately the cause of death for people who have ALS.

Incidence and Prevalence of ALS

Approximately 30,000 patients in the United States currently have ALS. The disease has no racial, socioeconomic, or ethnic boundaries. The life expectancy of ALS patients usually ranges from about 3 to 5 years after diagnosis.

ALS is 20 percent more common in men than in women. However, with increasing age, the incidence of ALS is more equal between men and women.

About 90 percent of ALS cases occur without family history. The remaining 10 percent of ALS cases are inherited through a mutated gene. On average, it takes about one year before a final ALS diagnosis is made.

ALS signs and symptoms

Once a motor neuron degenerates completely, the muscle that it controls no longer receives impulses from the brain. Approximately 60 percent of ALS patients experience muscle weakness and stiffness as the initial symptom.

Continue reading “ALS Overview”