And now mom has pneumonia and is on a vent :(

[Mandyintn12]

I have no idea what to do we came to the er .. Mom has pneumonia .. The had to put her on a vent what do we do now

 

[Mandyintn12]

Actually she is Intubated I misspoke

 

[Barbie]

Hi mandy-- I haven't met you before. I am so sorry your mom had to go to the hospital--hope she will be able to over come the pneumonia and come home. What are the doctors saying?

Tell us a little about her. was she just diagnosed in Feb.? how has her progression been? how old is she? are you her primary caregiver? it is very hard and scary dealing with all of this.

Sending you a hug

 

[Mandyintn12]

She is 58 bulbar onset .. Peg tube in April still down to 80 lbs has copd on top of the pneumonia .. I along with my sister and father care for her ...she has had symptoms since October ....

 

[lgelb]

This would be a good time to get all the advance directives done, if not already. The hospital staff can help. Why is she so thin? Maybe they can help her put some pounds on while she is there...I would ask for a dietetic consult when she is stable...hopefully, once she has had antibiotics and fluids, she can come home as Barbie says. I would make sure of what is in her chart in terms of her wishes, and try to stay with her (perhaps rotating if there is more than one relative around). I'm sorry -- I know it is very hard.

As to what else to do, just being there will help her a great deal. Hospitals are scary, especially for people who don't have a lot of movement. Bringing her music, audiobooks, videos and other things she likes to watch/listen to at home is always good. Sometimes just reading to her is soothing. The main thing I would say is to know every drug she's getting and why, and everything else that's being done. Everything should be geared toward keeping her comfortable; she should not be in distress. Are there any specific questions or decisions that are bothering you?

 

[AKjo]

Mandyintn12, Thinking about you and your mom... any update? So sorry this is happening.

 

[Mandyintn12]

so mom pulled out her intubation tube last night ... they put her on cpap and now today only on oxygen and the looks great.. the only thing is she still cant cought and get that mucus up.. so pulmonary care wants to meet with us at 4 to discuss a trache... i am terrified

 

[MaxEidswick]

>i am terrified

thouughts w/ you!

 

[AKjo]

Having a trache won't change her ability to cough. She will still need to use a cough assist machine. Has she been using one before the pneumonia?

 

[Nikki J]

I hope you mistyped and she has bipap not cpap. Cpap is dangerous for ALS patients. I am sorry for all you are going through

 

[AKjo]

She is a feisty one, isn't she!

 

[Barbie]

Gosh Mandy, don't let them talk you or her into a trache, unless she really wants one and her care givers are on board. that is a big decision and not to be taken lightly.

we recently got a cough assist and my husband likes it a lot and it is easy to use. he uses it 3 times a day and extra if he feels congested. he is on a trilogy when sleeping.

 

[lgelb]

Mandy,
Barbie is right -- a trach is a big deal. And I too hope you meant to type BiPAP!

Is this a hospital experienced with ALS? What hospital is it?

If she "looks great" but needs help with mucus, she's like 95% of the frequent PALS here on these forums, most of whom don't have (and I don't think most are considering) a trach (tracheostomy; I'd look it up on line). We talk about a lot of ways to reduce and get mucus out.

A trach is for people who are going to die if they can't take in and get out more air. Do you know anything about your mom's lung function? Was she on BiPAP before the hospital? If not, it would be pretty unusual for her to suddenly skip past the months-to-years of BiPAP that you usually go through before possibly needing a trach.

If she is stable in terms of moving air, (ask what her sats are, look and see what her pulse and BP are), I wouldn't agree to anything until you have more facts. Ask for a respiratory therapy consult about the mucus and coughing. Is she drinking? Give her some pineapple juice through a straw if so, demand a heated humidifier and a Cough Assist trial starting at the lowest setting. Make sure she is positioned in as upright a position as possible at all times.

Let us know if you need help finding a pulmonologist in your area who at least if s/he doesn't have privileges wherever your mom is, can recommend someone who does, so you get a second opinion.

 

[Mandyintn12]

update: they had no choice but to do the trache and vent (said it was life or death)... she is tolerating it well...we did consult with 2 seperate pulmonologists as well as moms als dr...
she would not do the cough assist at home nor would she wear her trilogy mask (she has had both for several months)..she was terrified of the mask... so here we are .. with no clue what we are going to do from this point forward.. the hospital is suppose to train us on care and on all the ins and outs of the trache and vent .... she has not been able to drink anything by mouth for a few months....
i am still scared to death about what we are going to do ..

 

[Diane H]

I have had a trach and vent for eleven years so I think that I can give you the information you need to relax a little, adjust to the equipment, and then relax a lot! It is way too much information to post on the forum, so please check it out at Vents and Trachs