New to site... need advice.


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New to site... need advice.

Postby Mmeconi » Thu Jul 27, 2017 2:56 pm

Hi, my name is Michelle and I'm new to the site. My mom was diagnosed with PSP about 5 years ago and her neurologist has been impressed at how slow progressing it's been. But just over a week ago, my mom fell and fractured her hip requiring surgery to repair. There was great discussion about how to anesthetize her but ultimately she had a general anesthetic because she's previously had multiple back surgeries and was fused at all levels where a spinal could be given.
She had surgery 9 days ago, and they had to intubated her with a paediatric nasal intubation tube because they couldn't get anything else into her. 4 days ago they decided that the only recourse to ween her off the vent was to perform a tracheostomy so they could start weening her. ( The paediatric ET tube was not condusive with ween from a vent)
Long story short, she now has a trach, is on c pap for the last two days with the exception of at night, when they feel she's very tired from breathing independently, and they've been hooking her back up to the vent at night. She opens her eyes, nods appropriately, moves her arms and legs, but doesn't seem to have much dexterity to her fingers right now... which really sucks because writing was her only method of communicating before the broken hip. Her eye movements seem odd to... I know PSP effects eye movement , she's just not had much of an issue with this until now.
I've read that general anesthesia can cause PSP to progress quickly. I'm wondering if anyone has dealt with a loved one who required an emergent general anesthesia and ultimately ended up with a trach. Did things get any better? Can I hope for any progress? Was the trach permanent?
Until this happened my mom was living independently with some support for bathing a few times per week. I don't foresee her going back to that... but can I expect any improvement?
She has also been running a fever and her WBC's are elevated. She's on a wide spectrum antibiotic until cultures come back. It's all so overwhelming... I struggle with if we've done the best thing for her by allowing this tracheostomy to occur... but I don't feel we had a lot of choice since the alternative was to extubate her and let her go into respiratory distress and ultimately arrest. Any input would be appreciated. My mother has no advanced directives or living will... and she's never really expressed her wishes to us. At on point she was resowned to the fact that she might someday need a feeding tube and trach... but at the same time, she cries almost daily for my dad who passed 6 years ago and post stuff on Facebook about being anxious to be with him and asking him to come get her. Which leaves me confused about what her wishes truely are.
Thank you for any input,
Michelle
Mmeconi
 
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Re: New to site... need advice.

Postby HelpingDad » Thu Jul 27, 2017 5:05 pm

Sorry to hear about the difficulty your mom is now having.

My dad had surgery for a bowel blockage caused by a hernia. He never got back to his pre surgery baseline.

As for the Advanced Directive/will I suggest you contact a lawyer who specializes in elder care law. Sounds like someone needs to be granted power of attorney plus durable healthcare. At this stage you MAY have to go before a judge for that to be granted.

Ron
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Re: New to site... need advice.

Postby Mmeconi » Sat Jul 29, 2017 4:31 pm

Thank you Ron...she has come a long way in the past few days... she's alert, orientated, gesturing trying to make herself understood. Only on oxygen through her trach, and a feeding tube through her nose for nutrition. She's using a writing pad like before although her dexterity is not the same and we are unable to read most of what she writes...
She is also using her iPad to type messages... but again... she's not hitting the keys properly and becomes frustrated. Does anyone have a suggestion as to anything we can try to allow her to communicate her wants and needs a little easier?
Right now it's just a bad game of charades or pictionary. Thanks for any input!
Mmeconi
 
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Re: New to site... need advice.

Postby HelpingDad » Sun Jul 30, 2017 6:38 am

There are communication picture boards you can try, just google it and you'll see what they look like. I'd still looking into getting someone PoA for her, now that she is alert it may be an easier process. Unfortunately there is a good possibility she will become unable to communicate her wishes as the disease progresses.

Ron
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Re: New to site... need advice.

Postby Robin » Tue Aug 01, 2017 11:57 am

Sorry to hear about all this. You can probably expect some improvement, especially when she gets out of the hospital. But I doubt very much she will return to pre-hospitalization baseline. I have known few people placed on vents at the hospital. And I can think of only one person who got off the vent. Long-term care facilities that can accommodate trachs can be hard to find. And they are very expensive. (We paid $1K/day for my father's care. And that was 10 years ago in Utah.)

Can your mother make a decision is she wants to continue living like this? If she doesn't, then removal from the vent is rather straightforward from a medical viewpoint. Of course it's very stressful for the family even if your mother decides that's what she wants.
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