Long few days. Just needed to let it out.

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Jomeha

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CALS
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Ringoes
The past few days have been (insert appropriate word here that I’m not sure of)

wednesday my PALS went for his feeding tube. He’s not a complainer and has a high pain threshold but does get anxious before anything like this. Because of the ALS they told him no anesthesia and explained the procedure. I suspect he had himself anxious enough to make an uncomfortable procedure harder but he had a really hard time with it. It was supposed to be a same day thing but he was in a lot of pain and so they kept him overnight.

Thursday morning on my way to get him I follow up with patient coordinator about the fact that I haven’t yet heard about timing etc. for the nurse that’s supposed to come teach us about the PEG. Fast forward through 5 phone calls and an irate me to the on call nurse coming at 6:30 pm. At this point my PALS hasn’t eaten since Tuesday night, I’m giving him water from a syringe into his cheek and he has already lost over 10 pounds in the last month because he’s just not eating. On call nurse comes, she feeds him one container of food, explains flushing and site care and leaves. We need to give him his meds and stupidly clog the tube. Not beating myself up, but yes, we clogged it. Honestly thought we were okay with the process but obviously not. I call the on call nurse who says to try to flush, leave it 2 hours, and call back if not opened. I call back and she says she spoke to triage nurse who said leave it overnight. I don’t sleep, planning what I’ll do, who I’ll call if it isn’t open. On call nurse texting me at 3:45 that she’ll come back in the am.

friday- She gets here at 8:45 and starts trying to clear it. Seltzer, coke, lemon juice, meat tenderizer, I don’t know what else. The nurse who accesses his port came to remove the current access and she tries to help too. At this point he’s had about 400 calories since Tuesday night, no meds since Thursday morning except the liquid gabapentin. About noon I wind up calling for non emergency transport to get him to local hospital. We don’t have a wheelchair van yet, he’s weak, and I’m afraid to try to manage him in and out of my car for the hour trip to the hospital that had put the tube in. Getting him home Thursday was hard enough with 2 young guys getting him in my car for me. Again, maybe the wrong decision but not beating myself up. I realize it was made with available info and safety in mind. I get into the ER room to find them in a frenzy. his Pulse Ox is upper 80’s and he’s coughing. Hello, it’s ALS. He doesn’t have his bipap on, he was trying to help them move and undress him, and his mucus and phlegm are high because the glyco is stuck in his tube. They won’t listen to me , decide he’s probably got pneumonia from aspirating and start ordering all kinds of tests. I know joe- Put the mask on, sit him up to help him cough, and give him a minute. but they don’t listen. Very long story that involves an inept gastroenterologist who tried to put a metal rod through the tube to clear it, which resulted in joe yelling ouch and a tube full of blood, and they decide no pneumonia, he looks and sounds better on the bipap, and they’re going to transfer him to the hospital that put the tube in because they've never seen one like this and it’s Friday night. In the testing though they find what they believe to be a malignancy on T2. During the timing of March/April when they were confirming the ALS diagnosis they had seen something in an MRI, we had repeated the MRI, but nothing more was ever said. They also found something on a kidney that they wanted to ultrasound but we didn’t. It was a time of Covid in NJ at its worst and we figured who cares if it’s cancer, we’re dealing with ALS. Now I’m wondering what really is going on. If we should pursue more information here or not. Maybe that’s part of the reason he has so much pain in his shoulders. The transport takes him about 10:00 for the 45 minute drive to the PEG hospital. I don’t go since they’ve been clear I can’t go in with him. I’m on an hours worth of sleep from Thursday to Friday, very little the night before, and stress adrenaline downswing so I get home and crash. Nurse calls at 12:30 for meds info (which is in the chart from 2 days ago, but I guess thoroughness is good), and Joe calls at 1:30 almost in tears saying “help me”. I know they were working on getting him meds, I know they won’t let me in, there’s nothing I can do.

Today they will clear or replace the tube. In hindsight I would have used a ton more water with the meds, and I would have taken him to the hospital that put the tube instead of the local one. He’s suffered because I made poor decisions. I can’t undo them, am not beating myself up, but am accepting responsibility. We need to get through today, get him home.
 

lgelb

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You and Joe have had quite the few days -- I can't wait to hear that he is home. I think the worst part of being a CALS is that sometimes there are no good choices, and so many skills that no one can get right all the time. Keep us posted! Thinking of you.

--Laurie
 

ARCG

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Oct 12, 2016
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Lost a loved one
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1/2015
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One of the many frustrating parts of this illness is some of the medical professionals one has to work with who just don’t understand ALS. I can’t tell you how many times someone has suggested oxygen and I have to remind them that is counter indicated in ALS. It is unnerving, as I have no medical background, yet am constantly educating others on the right protocol for this illness. It is exhausting. I have an integrated finely stunted system of devices, which I have learned to use, maintain, etc. to support the best quality of life for my pals. Thank goodness for this forum where folks understand.
 

ARCG

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Tuned not stunted.
 

Bradytwin2

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Joined
Jul 14, 2020
Messages
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Reason
CALS
Diagnosis
06/2020
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US
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VA
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Williamsburg
I can only imagine the stress and strain and utter exhaustion felt by you and Joe. <religious content removed; please use Religion section when appropriate>
 
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