Chemo patient off ventilator, but talking gibberish

[Anonymous]

But it does not make sense that the medical team from the ICU would copy and paste from the internet as a primary means of communication; I work in a hospital and have never seen such a thing.

[Anonymous]

Anonymous wrote:But it does not make sense that the medical team from the ICU would copy and paste from the internet as a primary means of communication; I work in a hospital and have never seen such a thing.

I agree. There is no way a doctor is communicating with a family member via text.

OP, you can't give your friend meaningful advice because she is unable to convey to you what is going on. Based on your posts, it seems like your biggest concern is whether or not the child will improve from this setback.

The two options I can see are to trust the current treatment team or move to a different hospital. Switching hospitals might not be logistically feasible for a number of reasons.

[Anonymous]

OP, I am so sorry for your friend. That being said you can’t give her meaningful advice since you don’t know the whole picture and you aren’t in the oncology field. Just sympathize with her and offer tangible help like food, driving to and from hospital , etc.

[Anonymous]

The meds used to sedate someone on a ventilator are heavy. They will take days to come out of her system. This is alarming to watch but not always unusual.

[Anonymous]

Is your friend part of an online leukemia support group? They might be able to offer better advice.
The Leukemia and Lymphoma has links on their page to various support groups. https://lls.org/

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is the parent not with their child 24/7? Can they not ask to speak with the doctor in charge?

Parents are divorced, each is there half the time but other parent is weird and won't collaborate or share information. Hospital is in NY too and said certain records cannot be disclosed due to child privacy laws for children ages 9+!!!! Can.you.imagine. having a child being treated for leukemia, or in ICU on a ventilator suddenly and hearing that? I think a doctor passing through is rare. This hospital seems like hell.

Doctors usually round once a day. The nurses are your point of contact. A PICU patient either has a dedicated nurse or a nurse with a 1:2 ratio and should be able to convey info to the parents. Also they need to coparent better, I have no sympathy for them refusing to even be at the bedside at the same time

[Anonymous]

She should have a neurological evaluation after what happened anyway. Parent needs to push for it.

[Anonymous]

Why is the parent NOT WITH THEIR CHILD!!

[Anonymous]

It’s likely delirium and will pass, but a psych evaluation could be handy to confirm that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Is the parent not with their child 24/7? Can they not ask to speak with the doctor in charge?

Parents are divorced, each is there half the time but other parent is weird and won't collaborate or share information. Hospital is in NY too and said certain records cannot be disclosed due to child privacy laws for children ages 9+!!!! Can.you.imagine. having a child being treated for leukemia, or in ICU on a ventilator suddenly and hearing that? I think a doctor passing through is rare. This hospital seems like hell.

Doctors usually round once a day. The nurses are your point of contact. A PICU patient either has a dedicated nurse or a nurse with a 1:2 ratio and should be able to convey info to the parents. Also they need to coparent better, I have no sympathy for them refusing to even be at the bedside at the same time

This. The parent needs to speak to the RN either in person or they can call the unit and ask to speak to the child's RN - tell the RN to page the physician and let them know that the parent is trying to get ahold of the MD to discuss their child's case. If in person, even if you missed MD rounds, you can request the MD to the patient's bedside through the RN or even the unit clerk. However, agree, the parents need to figure out a way to get along. The physician team will NOT want to have to repeat everything they say to two different parents, nor do they have the time for this, frankly.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Sounds like she is delirious. Parents should text the team “larla seems to be is delirious and we are requesting a psych or whatever other service does these in that hospital) consult (psychiatry generally does these evals inpatient though in reality it’s a medical/neuro issue.)

if they say no, reply “are you saying she is not delirious or are you declining a consult for a delirious patient?”

This is terrible advice. This is not a psych issue.

I think your role in this situation is to be the friend who listens and not the friend who gives advice. If you want to do something helpful, buy your friend food or something.

No, it’s not a mental health issue but evaluations for possible delirium are conducted by the psychiatric consult team in the vast, vast majority of cases. It’s good advice. Source-years of hospital experience

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Is the parent not with their child 24/7? Can they not ask to speak with the doctor in charge?

Parents are divorced, each is there half the time but other parent is weird and won't collaborate or share information. Hospital is in NY too and said certain records cannot be disclosed due to child privacy laws for children ages 9+!!!! Can.you.imagine. having a child being treated for leukemia, or in ICU on a ventilator suddenly and hearing that? I think a doctor passing through is rare. This hospital seems like hell.

Doctors usually round once a day. The nurses are your point of contact. A PICU patient either has a dedicated nurse or a nurse with a 1:2 ratio and should be able to convey info to the parents. Also they need to coparent better, I have no sympathy for them refusing to even be at the bedside at the same time

This. The parent needs to speak to the RN either in person or they can call the unit and ask to speak to the child's RN - tell the RN to page the physician and let them know that the parent is trying to get ahold of the MD to discuss their child's case. If in person, even if you missed MD rounds, you can request the MD to the patient's bedside through the RN or even the unit clerk. However, agree, the parents need to figure out a way to get along. The physician team will NOT want to have to repeat everything they say to two different parents, nor do they have the time for this, frankly.

Exactly. The physicians are not going to hold 2 separate care plan meetings for 2 parents who don’t want to be in the same room. Your friend and her partner are going to need to work things out here.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Sounds like she is delirious. Parents should text the team “larla seems to be is delirious and we are requesting a psych or whatever other service does these in that hospital) consult (psychiatry generally does these evals inpatient though in reality it’s a medical/neuro issue.)

if they say no, reply “are you saying she is not delirious or are you declining a consult for a delirious patient?”

This is terrible advice. This is not a psych issue.

I think your role in this situation is to be the friend who listens and not the friend who gives advice. If you want to do something helpful, buy your friend food or something.

No, it’s not a mental health issue but evaluations for possible delirium are conducted by the psychiatric consult team in the vast, vast majority of cases. It’s good advice. Source-years of hospital experience

This is not a routine case of “possible delirium” it’s a child with newly diagnosed leukemia who has been in the ICU and ventilated. If there are any neurological changes, it’s either medications and/ or ICU pyschosis- or, a neurological problem due to the cancer. A neurologist should see her, not a psychiatrist.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Sounds like she is delirious. Parents should text the team “larla seems to be is delirious and we are requesting a psych or whatever other service does these in that hospital) consult (psychiatry generally does these evals inpatient though in reality it’s a medical/neuro issue.)

if they say no, reply “are you saying she is not delirious or are you declining a consult for a delirious patient?”

This is terrible advice. This is not a psych issue.

I think your role in this situation is to be the friend who listens and not the friend who gives advice. If you want to do something helpful, buy your friend food or something.

They are asking my advice in this case. It's a close friend, but out of state.

It's so bad, the response from a worker was a blurb about peripheral neuropathy - copied and pasted from internet or I don't know. They showed it to me. As if that affects speech. .

I suggested they ask to speak with a neurologist. I pray this is temporary and can resolve. Hug your kids you all.

Why are they asking your advice, do you have a medical background?

[Anonymous]

Please do not come to DCUM for medical advice.