Decline after peg surgery

Missgranma

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My sister has had a fairly fast progressing ALS having been formally diagnosed Sept 2019. Limb onset has given way to inability to speak intelligibly at all and just had a PEG placed this past week due to very poor swallowing, dehydration and weight loss.
My concern is her distress and discomfort with recovering from this minor surgery. She seems so "out of it" and unable to tell us her needs. (Loving husband and full time caregiver and myself and other family).
She is just repeating unintelligible pleas and seems just anxious and depressed unless sedated with oxy and xanax? Is this normal post OP or FTD. She just seems more and more unreachable.
 

Missgranma

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Please....I need some response. I've gone from having a sister and trying to make sure all ducks were in a row with ALS. The best equipment etc.. to feeling completely slain by this demon who has left her motionless. I was just bragging a few weeks ago how I knew what she was saying. Now none of us has a clue and she looks terrified. Honestly I never could have imagined anything worse than this! Sorry I just had to vent.
 

affected

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I'm so sorry for what is happening with your sister.
What has her neurologist said about her reaction? Did she have anaesthetic for the procedure?
Does it seem general anxiety and confusion or pain is the problem? Has this been assessed since the procedure to try and pinpoint the issue and solve it?

My husband had bulbar onset ALS and FTD, and had a lot of pain for 5 days post peg. He was already paranoid and agressive and he became worse and needed medications. Then the pain stopped fairly suddenly and he returned to the level of FTD issues he had before.

If your sister was dehydrated, then the fasting before the peg may have exacerbated things too.

Is she tolerating fluids and feeds through the peg? You may have to be careful and feed her slowly to avoid nausea. If she has pain and is nauseas she may be breathing too shallowly and therefore may have a lot of CO2 building up.

There are so many things that could be happening around this that I highly recommend you have her assessed by her neurologist or clinic team so you can get her the best help as fast as possible.
 

lgelb

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Tillie makes all good points. In addition, the procedure may have been a physical and mental shock especially if she was still in some denial given her rapid progression.

I would also evaluate the formula that is being used. "Real food" that is blended or an alternative formula like Kate Farms is preferable to corn syrup-based formulas.

Does she use a BiPAP?
 

ReginaS

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Do you have any alternatives that could help with communication? If she can blink w. her eyes or signal in other ways there are things you can do. -- Not being able to communicate raises the stress level for all involved. I am sure you are aware of this all. Much luck and I hope for your sister's sake and for the rest of you all that whatever this is - that you will find ways to connect with her again. And sometimes tears and depression are necessary to feel better again. ALS can be a rough journey.
 

Kim Ordile

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I personally had a Peg tube put in as an ALS patient. I really struggled with my digestive tract after surgery. The drugs they gave me during surgery slowed everything down and I couldn't have a bowel movement! Being constipated made my heart race, I was short of breath and nauseous. My husband went to CVS pharmacy and they recommended liquid magnesium. My husband was able to put it right into my Peg tube so I didn't have to taste it! It worked right away and I felt much better! I have a prune juice now every morning in addition to my other fluids. With ALS the muscle strength and coordination is not there to push effectively for a bowel movement. .I hope this helps and that you can find out what is causing your sister distress!
 

Elkhorn3

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Constant adjustment seems like the theme of the ALS journey. Hopefully a bit of the anxiety was result of the anaesthesia, and has worn off a bit? Is there an occupational therapist who can help figure out a way for her to communicate basic needs? I hope you both can grieve, cry, and adjust as best you can. Please let us know how you are doing this week. We are all on the same journey with you, each in our own way.
 
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