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Day Twenty-Eight

In my December 10 blog post “Pain is there for a reason,”  I wrote:

We’d appreciate your prayers for complete healing around the stoma and minimal to no side effects from the strong antibiotic.

Early Tuesday morning I took my 28th and final dose of the antibiotic—no major problems! We went for a recheck yesterday afternoon, and the nurse practitioner said the area surrounding the stoma looks good. In the event there are any flare-ups, she put in a standing order for a home health wound care nurse to come take care of it.

After several intermittent days of considerable pain, we appear to be on the road to healing and recovery. Today marks 28 days since the insertion of my MIC-KEY. As one of our daughters said, “It’s been a wild ride . . .”

We appreciate you and your prayers!

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Life is in the details!

SNOWFLAKES! Purportedly, no two alike. It takes a Mastermind to first of all devise such intricacies and then . . . own the Supreme intelligence to put the conceptual design in motion.

From Science: How Stuff Works

The next time you’re catching one with your tongue, you might stop to consider the long and arduous plight of the snowflake. Those delicate and intricate crystals have traveled many miles before they plummet to the ground alongside their trillions of cousins. And although they fly in multitudes, the word on the snow-slicked street is that no two of those little flakes are alike. Can every snowflake really be different?

The short answer is yes, snowflakes really are different from one another. You might find some that are exceedingly similar (particularly at the beginning of a flake’s development) but fully formed snowflakes are indeed structurally different, if only by tiniest of degrees.

Is every snowflake actually unique?

Continue reading “Life is in the details!”

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Catch the Wind!

LOVE this. Hope you enjoy it, too. ❤️

General Electric is not likely to reimburse me for endorsing their name . . . but they probably should. 😉 Ever since GE’s 2006 release of this TV ad promoting wind energy, I’ve been captivated. Imagine capturing that much wind in a single wide-mouth glass jar! After securing the lid, the young lad traveled purposefully by foot, rail, and motorcycle sidecar all the way back to his great-grandfather’s birthday party—arriving in the nick of time—precious wind still tightly sealed inside his prize jar. Anywhere along his journey, the boy could have met with peril resulting in a loosened lid or shattered jar. The “surprise” gift would have been forever ruined! 

Now backtrack over two thousand years and envision the love, care, and meticulous planning of every detail for the birth of baby Jesus. He was protected and guarded by His heavenly Father as Mary and Joseph searched for a safe place for Mary to give birth to the King of kings and Lord of lords. Herod was out to annihilate Him . . . never happened!

Someone once exclaimed, “None of us are getting out of here alive.” That being said, I can surely trust my heavenly Father today with my life. After all, He arranged for my birth, loves me, has always taken care of me . . . and even now, He has everything under control. Helps take away the worry and fretting. This world is not my home . . . I’m just passing through! 

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Pain is there for a reason

 

Merriam-Webster’s online dictionary:

A localized or generalized unpleasant bodily sensation or complex of sensations that causes mild to severe physical discomfort and emotional distress and typically results from bodily disorder (such as injury or disease)

Wordsmyth.net:

Physical distress or discomfort that is usually caused by injury or illness and is the nervous system’s means of signaling to the brain that something is wrong.

Leslie:

Extreme discomfort around the area of the stoma where the G-tube was surgically inserted resulting in severe stabbing sensations and sleepless nights.

My Central Coast Palliative Care RN checked the MIC-KEY yesterday and instructed Jon to take me to French Hospital Emergency Room. My pain level was right around where the needle points on the image above. After making a phone call, the RN learned that the interventional radiologist who surgically inserted my G-tube on November 21 would be on call at French Hospital all day yesterday. We arrived at noon. It was determined a CT scan with contrast was needed. Because there’s only one CT machine at French Hospital, I had to wait my turn—as in 3.75 hours! My interventional radiologist saw nothing on the CT scan that would contribute to my severe discomfort. However, she noted the redness, swelling, and acute sensitivity around the stoma area may be indicative of cellulitis. I was sent home at 6:00 p.m. with an antibiotic prescription for seven days, 4X times daily. So grateful for our Rexall  pharmacist putting that prescription in suspension for me this morning so I can take it orally without issue—pills are increasingly a choking hazard.

We are quite tired today but very thankful to be in the comfort of our own home. We’d appreciate your prayers for complete healing around the stoma and minimal to no side effects from the strong antibiotic.

 

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Everything you never wanted to know . . .

It occurred to me that most of you are—like I once was—totally unaware of the myriad of processes involved in “simply” swallowing. Around this time in 2018, a registered dietitian at Forbes Norris ALS Clinic in San Francisco shared an informative two-page printout titled “Swallowing Tips” (attached below for you).

Things have progressed since the dietician put x’s in some of the boxes. For example:

“Drink with a straw. This keeps your chin tucked and helps you control how much liquid you are taking in each sip.”

Drinking with a straw is no longer an option for me. The muscles controlling my lips have weakened, and I am not able to achieve the necessary suction to suck from a straw. Sad reality . . . I can no longer smooch Jon nor kiss our dogs. 😙

As referenced in my November 14 “Counting our many blessings . . .” post:

Something as seemingly insignificant as [chewing and swallowing] shouldn’t be taken for granted. 

Swallowing-Tips-Forbes-NorrisDownload
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Life is fleeting . . .

Occasionally while driving, I have been faced with the need to abruptly apply the breaks to prevent a calamity. More often, I have time to come to a complete stop in a slower, more controlled manner. For reasons unknown to me, God is affording me time to plan and prepare for my exit from this world with a heart full of gratitude to Him for so many blessings.

We’ve had friends with no previously identified health issues who were suddenly taken without warning. I’m thinking of three individuals—two were women—one had two young children, the other had two young adult daughters. The third was a hard-working, loving husband and doting father of four daughters—one still an infant. In each case, these wonderful people were snatched away in their prime. Friends and family were in total shock and disbelief.

A wonderfully astute and affirming friend who once taught my Gregg Shorthand class at Pasadena High School was soon approaching her hundredth year. During a memorable phone conversation about five years ago, she remarked, “Leslie, all of my contemporaries are gone.” Her statement caused me pause . . . I still have friends who care. What would it be like if all my friends were gone? It brought me face to face with how quickly time passes.

Even though I realize life is fragile and brief, it never occurred to me that mine could be cut short due to a progressive, degenerative disease. At times it seems as though I’m peering down on my life from above . . . like it’s not really me who has been diagnosed with a serious illness. The only word that fits is . . . surreal. 

These verses from the New Testament book of James have helped guide my life. Perhaps they will speak to you, too.

James 4:13-16  (Living Bible)
Look here, you people who say, “Today or tomorrow we are going to such and such a town, stay there a year, and open up a profitable business.” How do you know what is going to happen tomorrow? For the length of your lives is as uncertain as the morning fog—now you see it; soon it is gone. What you ought to say is, “If the Lord wants us to, we shall live and do this or that.” Otherwise you will be bragging about your own plans, and such self-confidence never pleases God.

Reportedly once seen on a graveyard headstone . . .

“I told you I was sick!”

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Our Maiden Voyage

You would highly regard our five-star Central Coast Home Health RNs. Such caring, confident, calm, and competent professionals who put the needs of the patient first. Yesterday our nurse provided superior, easy-to-follow, hands-on instruction in the use and maintenance of my new high-tech MIC-KEY. Using a 60 ml syringe, the nurse handled the 60 ml pre-flush of water into my port and encouraged Jon to take over,  administering 5.5 ounces of formula followed by a post-flush of 90 ml water. Note: We use reverse osmosis (RO) water—the same water we drink, cook with, give our dogs and hens. The plan is to slowly introduce the prescribed Kate Farms formula to allow my digestive system time to become acquainted with it—hopefully preventing digestive disturbance. We’re aiming for absolute success!

So thankful Jon is able and willing to assist. Also grateful the process doesn’t involve needles—Jon is squeamish when it comes to needles. However, he is comfortable attaching the extensions and tubes to the MIC-KEY which is comparable to some challenging and intricate plumbing projects he’s tackled for us.

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Let’s clarify tube feeding

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!

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Once upon a time, there was a MIC-KEY

Leslie in Pre-Op Day Surgery

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!