Catherine-Ann / Pure-Grace
Sep. 23, 2022
IT'S AUTUMN TODAY (09.22.22)
Thursday, September 22, 2022 8:23 PM
Hello, thanks for checking in!
Each day this week for Larry, has begun with 2 to 3 therapies. He's pretty bushed by the time he's finished with physio.
When I asked him about it, he didn't say much. His mood again was rather sullen & he kept drifting off to sleep.
The nephrologist came into the room with a nurse & said "We're here to take out Larry's PICC, he's officially off of dialysis." I expressed the concern of each of our family members regarding all (3) to nothing. He said that Larry is at 23%. He said that 15% or below requires dialysis. He said that Larry's urine output is good and his % number keeps rising. He froze the area with a needle, snipped a couple of sutures that fastened the apparatus to his skin, then a 2 second pull of the tube, & he was finished. The nurse stayed to be sure the bleeding had stopped. Larry didn't have any comment on how he felt about dialysis being over.
A rash that started yesterday had escalated by early afternoon. I brought it to the attention of staff & said I was concerned that it would reach the terrible state it had reached a couple of weeks ago. It did not get addressed until 6:45, when he was given Benadryl through his feed tube. He stopped itching almost immediately. It was hard not to be upset that it wasn't being addressed earlier, but the phrase "Pick your battles!" would apply for the nurses, as other patients' needs more serious than an itch needed attending too, just as the assistance required twice today for Larry's 2 procedures, kept the nurse from attending to someone else's 'itch'!
The joy of the morning didn't last long. The speech therapist arrived to do the swallowing assessment with the camera down the nose to the throat. Mary-Lynn had just arrived & we were asked to leave the room until the test was finished. When we returned, it was explained to us in great detail about how Larry's swallowing was not good. He has serious dysphagia. She said it will take a lot of therapy exercises, several times a day, every day to hope that he may regain the ability to swallow. He aspirates too easily. When he is given small ice chips, he starts coughing & choking by the 3rd one. He really wants apple juice, but the lungs will not tolerate anything but a little water. The therapist said she explained it all to Larry, but he showed no visible response. He fell asleep as soon as she was finished with him.
I had planned on leaving when Mary-Lynn arrived at 3:00, but too much was going on. By the time my sister Erin came at 6:00 I was still 'advocating' for Larry's itchy rash resolution. The rash has not reached that speckled blood stage & I sure hope it doesn't. There was no answer to why this happened before. At least this time, he is not tortured by having his hands tied to the bedrails to prevent him from pulling out his feed tube.
I'm really weary tonight! This fight to not give in to discouragement for Larry, or for any of us who love him is getting, and will get, I'm sure even more challenging. Larry is being called to give so much... actually everything & more. I pray that all obstacles: physical, emotional, intellectual & spiritual will be like a cloud in the wind & just dissipate!
Through these 83 days, when things started improving, the rejoicing in any good news, almost always had another 'issue' to cloud the sun. When Larry does speak now, he almost always says "I want to walk!" or "I'm thirsty!" I gave him a pen & paper, as the rec therapist had done. Larry wrote "I want to walk and go home!", then he closed his eyes. He doesn't seem moved at all when I tell him about the exciting day mid-July, when the big deal was that he squeezed my hand 'once' & now how great his 2-armed hugs are, let alone everything else he's doing! He is not consoled by the reassurance of how far he's come, he only sees the goal, & wants to be there now.
Larry needs an abundance of grace to lift him out from the dark cloud he's under.
Thank you for your great support, encouragement & prayers. xoxo