After considerable thought and discussion with Jon, I am scheduled to have a Gastrostomy (G) Tube (aka feeding tube) inserted via interventional radiology at French Hospital in San Luis Obispo this afternoon, November 21. Outpatient procedure. This past Monday morning, we became aware of a cautionary red flag involving the protocol utilized by our local interventional radiologists vs. protocol utilized by UCSF specifically for ALS patients with breathing and swallowing issues. The main issue of concern is general anesthesia v. less sedation and no utilization of oxygen. Late Monday afternoon, UCSF’s highly trained and knowledgeable respiratory care practitioner (RCP) phoned our local interventional radiologist and comprehensively reviewed UCSF’s recognized protocol. UCSF does not use general anesthesia for ALS patients when inserting feeding tubes nor do they administer oxygen.
We believe we’re “good to go” now. Your prayers for our peace of mind as well as care and skill for the interventional radiologist, anesthesiologist, nursing staff, etc. will be appreciated. Admitting time is 11:30 a.m., surgery set for 1:30 p.m., discharge anticipated at 4:30 p.m.
The purpose of the G Tube is to supplement my daily food intake. Eating is becoming more challenging by the day, exhausts me, and swallowing presents a possible choking hazard.
Please be especially mindful of Jon. This is more difficult for him than it is for me. He’s walked through many phone calls, deliberations, some frustrating miscommunication and/or lack of communication between medical professionals and/or their staff, long periods of silence when we’ve been left wondering, etc. He is exhausted while being concerned for his wife’s well being. He’s a trooper but I know it’s taking its toll.
Thank you so much❣️
My thoughts will be with you.
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Yes, praying for you both as you go through this day. May you seek His face at all times… for peace, comfort, guidance and strength. I’m looking into your eyes right now and see only trust in your Heavenly Father. Love you
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You’ve got this!!!
Sharon, you of all people, truly understand what today is all about! Thank you. ❤️
Dearest Leslie, We have been and are continuing praying and thinking upon you. I have been particularly aware of the date and the time, and surrounding you and Jon with our prayerful support. Your serenity and trust are a remarkable example to each of us. We imagine you in close dialogue (or perhaps song) with Our Lord. Abundant blessings to you, Jon, the medical team. Our Divine Physician will be immanent in the operating room throughout the procedure and the post-op. Much love, Genevieve and Dolfi
P.S. Prayers too for the function and relief the new tube represents for you. Genevieve
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We will be thinking of you and Jon and sending support!
Thank you to three precious people who clearly understand the full scope of ALS. Truly means so much❣️
I started praying for him when we first started writing. I know of being the caregiver rather than the one cared for, and I remember how much prayer meant to me. I know it isn’t easy watching someone you love suffer, but I pray he sees the glory of God every day. Much love comes your way.
Thank you, Sharon. You are well acquainted with the role of caregiver. Thank you for praying, and especially for Jon, and for sending your love.❤️