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).


14 Replies to “Let’s clarify tube feeding”

  1. Thank you for taking the time to explain these procedures; it is very interesting. I don’t remember getting much training when my mom got her feeding tube, but that doesn’t mean we didn’t get any! But I know we didn’t get nearly as much help as you’ve gotten. Things have changed MUCH for the better in 27 years!

    May God continue to watch over and bless you and Jon; you 2 are great inspirations for me.

    1. Thank you so much, Marjy. As difficult as it is to lose a valued family member or friend to ALS, it does enable us to more genuinely empathize with people diagnosed with ALS and their family members. You two are precious.

  2. Thank you, Leslie, for sharing your journey. I am also on your same track. I would love to be able to sit and talk with you, but understand your energy level, would probably be draining on you. You seem to have connections I don’t, nor do I have a desire or the energy to ‘go’ to Stanford for appointments, etc.
    I am supposed to thicken liquids, and on a mechanical diet, although I understand that is changing to a different scale as well. My muscles simply fatigue … I am so thankful we know The Great Physician, and that we have eternity together forever. Our daughter, Mandy is also struggling with EDS that has progressed to the stage of affecting her heart as well. I am praying that your needs be met quickly in a timely manner. That you and Jon would not grow weary as you finish the race that our GOD has put before you. Keep looking up, dear forever friends❣️ What a blessing to keep seeing how GOD has woven our lives together in so many ways. As my friend Marge Clausen and I were praying together, I was praying for you and she knows you, as well. GOD ‘s family is BIG❣️
    Love you both with the everlasting love of the Father❣️

    1. Dear Vicki ~ Thank you for thinking of and praying for us. As worn down and fatigued as we both are, we know God is providing everything we need along the way. We haven’t “slipped through the cracks” unnoticed. In the words of Civilla D. Martin, born in 1866 in Nova Scotia, “His eye is on the sparrow, and I know He watches me.”

  3. Oh, Les. You take me to such depths with your words. An ambassador for life, you personalize your journey so that we can better empathize and encourage you. Yet, through these same words, we are the ones who are strengthened… by your stamina, your wit, and your continued grasp of the Almighty’s Hand. Love you

    I have to know, though… have you ever enjoyed an order of Animal Fries?

    1. Katie, yes, I did order In-N-Out’s Animal Style Fries one time but preferred the regular fries with their famous secret spread!

      Thank you for taking a few moments to write a comment. Looking forward to seeing what today brings. Love you, sweet sister, and praying for your complete recovery❣️

    1. Phone tag is like a widespread virus. Enjoy Thanksgiving with Ned and the rest of your family as you take a day to specially reflect on your many blessings❣️

  4. Thank you for keeping us informed. My family was living in Calif. when the first In and Out started. I remember going there with my dad to get burgers to take home. We lived in San Gabriel. A fun memory.

    My husband’s slogan for this life is “It’s never easy.” When we are sharing a meal with loved ones this Thanksgiving, I will be sure to give thanks for being able to eat. I give thanks for your life and how God has given you the ability to handle what has come your way. The sadness is only overcome by the knowledge of what is to come for us who believe Jesus Christ is the Son of God and are obedient. For eternal life with our Savior we can rejoice. Psalm 31

    1. Nice to hear of another young girl’s In-N-Out memory with her dad. Interesting that it’s one of the memories that really seems to “stick”—at least with the girls!

      Regarding your husband’s slogan about life never being easy . . . it seems to me that so much of what is of real value in this life, isn’t obtained without what our realtor once called “sweat equity.” It’s only after you’ve put your heart and soul into a project that the worth becomes apparent! Love you, Sharon. ❤️

  5. Thanks for including us in your journey. We miss seeing you out and about in the yard, but managing your condition does take a lot of effort, and we know it’s tiring. You are the best neighbors, and we will help out with anything, if you just ask.

    Just for the record, I prefer the Sylvester’s Mushroom Burger over In-N-Out!

    1. Thank you, Chuck, for checking out my website, for being so ready and willing to help, but most of all for being the best neighbors ever❣️ When there’s something we need, we will be sure to ask. Note: Sylvester’s is in business for a good reason!

  6. Happy Thanksgiving Leslie to you and your family! I truly enjoy reading your posts. They are thought provoking, so informative, and give all of your loved ones and friends who love you a chance to stay connected and informed of your ever changing life events. Your positive and thoughtful view on life is a blessing to all of those who know you! Love you dear friend!

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