Friday, January 26, 2024

1st of 3 (outpatient - Lord willing) surgeries that will happen over the next month...

Today Dad has the 1st of 3 (outpatient - Lord willing) surgeries that will happen over the next month to remove his stomach & shoulder dialysis ports and permanently place a port in his arm. I think the last update I posted about Dad & dialysis was back before the holidays. At that time my Sister & I were training to administer Dad's dialysis at home which would be 7 days per week, 365 days per year (or 366 on leap year, but who's counting LOL). He was originally told that at-home dialysis was the better way to go, but what we eventually found was that it was a much much much more difficult path. That became apparent to Traci and I almost immediately, but Dad didn't realize it until after a month of training. Since last May Dad has been receiving dialysis at a center 3 days per week for about 3-4 hours each treatment for a total of 12 hours per week. On the other hand, the at-home dialysis was 7 days per week for 8-10 hours per night (while he was sleeping), but involved regular nightly alarms that will go off each night between midnight and 7am requiring some sort of adjustment. It also involved a lot of sterile procedures during the hook-up and disconnect stages that we were told will eventually lead to accidental infections which require a whole other set of procedures and potential hospitalizations. In addition to that it also required half of a bedroom to hold a month's supply of dialysis treatments. And in addition to all of those things, his needs for dialysis are going to increase as his kidney function and health decline over time so the 8-10 hour treatment once per night was going to eventually become 3-4 "shorter" treatments per day (virtually around the clock). It was during the last day of training when they had my Dad do a simulation and lay in a bed while administering the at-home dialysis when the light bulbs started going off (I always thought the saying should be "the light bulbs 💡 going on"). He said, "I have to do this everyday and never have a day off for the rest of my life compared to just going to the Dialysis Center 3 days a week for 4 hours each time?! No thank you! I'm not doing this everyday for the rest of my life." My Sister and I were willing to do it, but honestly had no idea how we could pull it off everyday for years ahead... and we had no idea if we would survive it after the past 5 years... we were already like zombies with much of our own lives & responsibilities falling apart. I recently learned that studies show that a majority of caregivers end up dying before the loved ones they are caring for... and that was the track my Sister and I felt like we were on. It doesn't matter how awesome our parents are and all the good intentions we have to take care of them... the harsh reality is that caregiving is the right thing to do, but it's brutal and it requires way more time, effort, energy, & resources than you can ever imagine, and eventually that takes a drastic toll on every healthy thing in your life. And we've had so much help from friends & family! And still we were drowning & dying. So when I say that my Dad's decision to opt for doing dialysis at the Dialysis Center instead of moving forward with at-home dialysis was a life changing decision, I mean it literally probably saved mine & my Sister's life as well as his! Since that day in late October the trajectory of our lives changed from "dying" to "recovering". God is breathing life back into dry bones... He is resurrecting us day by day & week by week. A few days ago Dad said, "This is the best I've felt in years." I think that's because we are on a stretch of making some wise decisions that at times seem contrary to the "right" thing to do. I think the sleep deprivation alone that we avoided every night by declining at-home dialysis and opting for dialysis 3 days per week at the Dialysis Center was a game changer by itself. We've also tweaked our daily & weekly schedules for a wiser approach on everything, especially when Dad does dialysis, schedules his Home Health Aide, & Dr's appointments... everything is a little bit smoother and in rhythm with his energy highs & lows. He used to have some sort of health related appointment 6 or 7 days per week, but now he has 4 "free" days when he doesn't have appointments because we were able consolidate those appointments into the same 3 days as his dialysis. This has freed Dad up to enjoy 4 of his days a week doing things he loves (or just have a day off) instead of just doing treatments and "surviving". On his full days off he is hobbling into the kitchen & cooking or he is able to go visit friends or run errands or basically be involved in things that would be referred to "quality of life" things. God is slowly turning things around and we are breathing again instead of gasping. Soooooooo today Dad is having the port removed from his stomach that was originally inserted for at-home dialysis. He will have 2 more surgeries after this related to switching from at-home dialysis. When it's all said and done, he will have had 5 unnecessary surgeries related to this stomach port which has never been used and never will be. Thank you to everyone who has helped, prayed for, & encouraged our family through this long journey. I know God is going to use all of the knowledge and experience we have gathered through this process to enable us to help, encourage, and pray for others as they care for their loved ones.