They don’t want to put her on a trach!: It is Day... - Headway

Headway

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They don’t want to put her on a trach!

Rd81105n
Rd81105n

It is Day 8, and we requested the trach, and feeding tube as the next step, a doctor actually said to me “ you really want to put her on a trach when you know that there is most likely no chance for meaningful recovery” I kindly ended the conversation, called back to speak to the nurse and told her when you all stop the breathing tube, you go home after... we HAVE to LIVE with it. My mom is gagging, and blinking, and responding to pain, in the first 72 hours they didn’t think it was possible... I know she’s in there somewhere I can feel it.. god I just pray she gets one more chance...

16 Replies
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That's horrible. What is wrong with people. I hope she gets the care she needs. He's the doctor smh

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I think you need to insist. Have you got a PALS (Patient Liaison Service) at the hospital? Go and talk to them.

I have to agree with Jan, please find someone who will help fight your corner on the his, your mum must be given the best chance possible. Everyone deserves that .

Janet x

I really feel for you. I had to fight for my partner, based on the small positives from him at the start. The Dr's in icu, don't always have the best bedside manner. I agree with exhausted housewife, see Pals, even speak to headway. X

Hi,

Firstly, I hope your Mum improves!

Secondly, I'm sorry to diasagree with the Doctor on this occasion, but back in 2007, when I was 47, I had Meningitis & went on to have a massive Stroke, during my 1 year stay in Hospital, including 6 Weeks on Neuro Intensive Care, sadly I had to have both, as I couldn't swallow, so I needed the Nasogastric Tube & I even arrested in the Scanner & needed to be resuscitated, the Doctor's told my Siblings, I probably wouldn't make it, but I'm a stubborn beggar & lived to tell the tale!! 😁😁

After a time the Trachy Tube, Etc was removed, but due to Severe nerve damage, the Nasogastric Tube was replaced by a P.E.G. Feeding Tube directly into the stomach, my balance is not so good, so I walk with the aid of a Delta Frame.

I'll be 58 in December & live my life alone & to the fullest!!!!!

Good luck!!

Peter x

I can only endorse what everyone else has said Rd.

My ex husband died because neither my son, daughter or I had the authority to intervene in his second wife's wishes, which were to have him transferred to a nursing home despite the hospital referring him for rehab at the Walton Centre . Even when my daughter arranged for private therapy it was withdrawn on his wife's orders.

You, or those close to you will be next of kin to your mum and you have the power to insist on continuing treatment, especially knowing what we know of the brain's ability to regenerate and the recentness of your mum's illness.

Best of luck in accessing the treatment your mum deserves. Cat x

For sure, find the patients liaison service. There are probably even leaflets and posters around the hospital about that. Put in a complaint.

Apart from Headway and PALs, someone can try citizens' advice and I also got tips once for a relative from Age Concern. Age UK has an email advice line if your mum is elderly.

ageuk.org.uk/services/age-u...

I was also told once by a family solicitor, who was giving me some tips for free as he is not a medical expert, to write to the hospital director and request an urgent case conference. Find his or her name and send a stiff fax/letter and request a response.

Make notes of all the improvements you are seeing and dates and times.

If she cannot communicate verbally, try this. Ask her to blink once for yes and twice for no. See if she responds. Then you have concrete proof she can hear you and understand. Get a video of that from a mobile phone if you can. Some patients can squeeze hands a bit as well and that can work. The hospital has to consider any evidence of communication, even blinking.

I hope your mum improves soon. They don't have a right to deny her a chance.

Hi all!! This board has helped me more than you know. They let her get the trach, I hurried and came to her hospital 3.5 hours away from me, she had just got out of OR...and it felt like she squeezed my hand, like I felt her hand get tight around mine.. i showed the nurse, I don’t want to tell the doctors because I know they will prob say it’s involuntary “ not purposeful” movement , but it brought tears to my eyes.

Thanks everyone

cat3
cat3 in reply to Rd81105n

Keep squeezing your mum's hand Rd, and willing her back ; if she's hearing you she'll fight to find her way. x

👋 Update: my mom is off the ventilator, and they want to move her from ICU b cause she is stabilized, she is still unresponsive but sometimes is following things with her eyes, but no communication.. we may have to move her to a nursing home, but she won’t be able to go in a specialized place, I feel like she is doing a lot of things, more than they expected because I suggested they start on her on ambien, I was reading that ambien has helped coma patients the doctors hadn’t heard of it but were kinda good in listening and researching and then actually doing it ... I’m wondering why doctors don’t try more to actually bring patients out of the coma... but just “make them comfortable”

HopeforTony
HopeforTony in reply to Rd81105n

Because they are not well versed, its about money (moving ppl OUT of icu), and they have little knowledge of the brain which is an extensive and amazing organ. Yes also fish oil, lopridem and magnesium. Make sure the magnesium wont interact with any of her meds. Also try getting a diffuser and putting frankincense it helps great with brain and functionality. Dont let them dump her in a nursing home just yet, she needs a brain rehab or rehab specifically for this condition. I TEND to not see nursing homes as very helpful but if she gets therapy in the like OT, PT, etc then thats fine. Good luck

Rd81105n
Rd81105n in reply to HopeforTony

Wow, thank you I am going to try all those things! I will get some one to go and do reiki with her a few times a week. I am so nervous about bed sores, and I also don’t like the way the “give a bath” I wish it was a way we could get her safely into a tub, I feel like that would def stimulate the Brain to create new pathways ...

HopeforTony
HopeforTony in reply to Rd81105n

Yes also make sure they are repositioning every two hours. She has massagwrs on legs and protect her heels from breakdown. I bought stuff on amazon!!! Yes good.

Angelia1234
Angelia1234 in reply to Rd81105n

Listen to your heart! My hubby is in this situation and i am positive that hes trying to communicate and sometimes drs or nurses seem to forget hes a person and miracles happen. I too read about ambien. Constant research. Drs forget that the cocktail they serve their patients come with a huuge list of side effects. Many include tiredness, blurred vision, confusion etc...

Prayers for you and your family.

Rd81105n
Rd81105n in reply to Angelia1234

Thank you, I’m sorry to hear about your husband. Your right miracles do happen, we have to keep believing and praying, although it’s hard walking through this unknown 🙏🏽🌟

Angelia1234
Angelia1234 in reply to Rd81105n

❤🙏

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