Feeding Tube

vltsra

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My PALS has the feeding tube procedure scheduled for tomorrow morning at 1030. He is very apprehensive about it but I have told him that we really need to proceed with it. He can still eat, but lately his eating is much more labored and we have to take breaks during feedings. He has to be fed as he doesn't have the strength to finish a meal himself. As he is still insistent on doing the Leap2bFit, I'm hoping that at least I can put that through his feeding tube as he seems to struggle with it in the mornings.

All of this is complicated by the COVID19 restrictions. I did get an exception from the hospital to allow me to accompany him, at least to pre-op. I'm hoping he does not have to spend the night in the hospital.

V
 

affected

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I hope it goes smoothly for him 💜
 

JimInVA

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V,

I hope everything goes smoothly for you both, tomorrow. My PALS, Darcey, was adamant that she would not be getting a feeding tube. No way... no how! When it became such a time as to be approaching "you do this now or not at all", I asked that she reconsider... for me. I understood that there would come a time when she would not be able to take anything by mouth. My concern was that she would need medicines... if for nothing more than to make her comfortable at that eventual "end time".

Darcey didn't want anything that she felt might be construed as artificially keeping her alive. When it was her time, she wanted it to be her time... and wanted to insure that there would be no outside influence that could take management of her own life away from her. I promised that I would use it only for medicines... and only for medicines that she would approve... given with only the amount of liquids necessary to transport them down her tube. She exhibited how much she trusted me to live my promise by agreeing to allow the insertion of a feeding tube.

On the day we arrived, they got her all settled in and ready for the procedure. As they were wheeling her out, I realized that they didn't have Darcey's Trilogy going with them. At that time, Darcey did not need a BiPAP if she was sitting up. But lay her down, and she couldn't breathe. They explained, "Oh its okay... we'll have her on oxygen." And I had to explain, "No its not okay. Your oxygen mask is not going to clear her lungs of carbon dioxide and it won't provide the pressure that she needs to breathe. SHE MUST HAVE THIS DEVICE ON.

This conversation continued and more hospital staff joined in the conversation. The next argument was that they couldn't properly administer the anesthesia that would put and keep her asleep. Throughout this entire time, I continued to smile, spoke in a steady, warm voice but made sure that they understood that using her Trilogy was not negotiable. At some point, I asserted to the fact that we didn't have to do this... that we could go home and they could move on to managing the next patient... who would, perhaps, be more amenable to their good intentions. It was about this time that the Anesthesiologist came in to see what was holding things up. Once he understood what we were discussing, he assured everyone that her mask would not adversely interfere with his process and suggested that they get going.

And they wheeled her away...

She really didn't seem to be away all that long when they wheeled Darcey back in. She was groggy but awake and they had her sitting upright in the bed. They set the Trilogy aside, upon a chair. She still had an IV still in her arm and they gave her some pain medicine. I don't remember that particulars as to "why"... but as Darcey and I sat quietly in the room, alone, I noticed her face begin to change. Her eyes began to take on a vacant look and her color was changing. Darcey was no longer breathing and was no longer conscious. I called for help as I moved around her bed to the Trilogy. With nary a wasted movement, I had it turned on and the mask upon her face. As nurses came rushing in, Darcey was coming to, again.

I don't remember exactly what the issue was... but I believe it had to do with her oxygen saturation, the anesthesia and the speed/amount they set for the pain meds. I'm sure one of our medical aware members could shed some light.

For me, the lesson learned was that while these are medical professionals and "they should know", the don't always. Be prepared to be your PALS' best (and sometimes ONLY) advocate by being aware, watching everything you can and asking questions. I suspect that we were the exception to the rule... but so often, unfortunately, those with ALS are exceptions, have different needs and may modify the typical standard care requirement the staff is used to.

In the long scheme of things, Darcey is grateful to have the feeding tube. As time moved on and she began to progress more slowly than her early years with ALS, she changed her mind in regards to nourishment via her PEG. By agreeing to have it inserted... and by my promise and vow to honor her wishes... she created a position of choice. For a disease that takes away so many choices, this was one she has been glad to have. It has been some time since Darcey has been to take anything by mouth.

Again, my best for an uneventful day and a very successful procedure!

Jim
 

vltsra

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Thank you, Jim. I always appreciate your perspective on things as you are such a devoted caregiver to Darcey. I can only aspire to be half as good.

We had a video consultation with the IR nurse regarding the tube insertion, and I've spoken with her again. They are aware that he needs the bipap at all times, and he will not be put completely under because his breathing is more compromised than Darcey's was. He is still eating pretty much everything by mouth; my biggest concern is breathing and whether there will come a time when he says he wants the tube and they tell him it's too late for the procedure. His neurologist thinks it is time now.

We had the conversation regarding what is the best decision before he agreed to the surgery. He has said "I don't want that" several times, but I don't think that is a conscious choice regarding end of life; I think it is more that he doesn't want to admit that he needs it and doesn't want the surgery. He just wants his ALS to go away. I discussed the feeding tube with him and explained that from a caregiver's perspective it is preferable for him to have the feeding tube rather than struggling to swallow, that I can keep him hydrated and give him medications through the tube, and that he can still eat by mouth. I also explained that if he really was going to refuse the tube that when the time came that he could no longer eat I would call hospice. He then asked me what I wanted. Well, I wish the ALS would just go away too, but that isn't going to happen, and I can't bear the thought of watching him struggling and choking to get nourishment. So I told him that I think getting the feeding tube is the right decision.

So here we are, getting ready for tomorrow's appointment. Thank you and I hope we will have an uneventful day.

V
 

KarenNWendyn

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Jim: “I don't remember exactly what the issue was... but I believe it had to do with her oxygen saturation, the anesthesia and the speed/amount they set for the pain meds. I'm sure one of our medical aware members could shed some light.”

Jim, I think you nailed it, plus likely a vagal response to pain, which makes the blood pressure drop. That happened to me after my procedure. Adequate pain meds and hydration help.
 

lgelb

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Within the limits of pre-procedural instructions, make sure he eats/drinks well today, V, and rests up. Any intervention is taxing. I too hope all goes well!

Best,
Laurie
 

KarenNWendyn

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Get some stool softeners and start taking tonight.
 

affected

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Ask for a drip to be put in on arrival so he is well hydrated throughout.
 

Elkhorn3

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My husband is also scheduled for a tube insertion tomorrow! I'll be thinking of you. Do some of you have advice on adjusting to the tube? Digestive/lower GI problems? He does still eat and drink, but very labored. Good luck, @vltsra.
 

vltsra

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Good luck to you as well Elkhorn.
 

affected

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we are standing right their beside you V 💗
 

pittsburghgal

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I hope all goes smoothly for both of your husbands, V and Elkhorn.

Sharon
 

lisa g

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Hoping all goes well for you both with your surgeries.
 

nona

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I hope it goes well for you both. Having the feeding tube was the best decision I made.
 
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