catheter?

[kepi]

Hi Andrea,
I think the last time she had an antibiotic was maybe 2 or 3 months ago. I'm still waiting for the results on the cultures, I don't know why it is taking so long....I will call friday morning. My mom has a PEG tube so what would be the best way to give it to her? She can't take anything by mouth.
Thank you,
Debra

 

[andyvaughn]

Kepi,
Cultures take usually about 72 hours, you should have heard by now, so certainly, call the docs office, and DON'T feel badly about calling over the weekend, this is your mother, her comfort comes first, doctors shouldn't be doctors if they won't take weekend calls (I don't mean calling for a sprained thumb, but this is too long to wait)
You can grind up your mothers medicine, whatever it is, and deliver it via the PEG. You can get a pill grinder at most pharmacys, grind it into a powder, (it won't be perfect powder texture - don't worry about it) then put the medication in some water, mix well, draw the medication into a syringe, and put into the gtube, flushed immediately with water. Jim got a PEG a few weeks ago, he hasn't taken a single pill since then, every medicine goes into the PEG... I have several pill crushers, so that if one is wet/dirty I have a clean one ready to go. I give him quite a bit of water via the PEG too, but he takes no food from it yet.
In the meantime, you can give your mother over the counter treatments for yeast infections, they have several on the market that are creams delivered in a tube, you place into the vagina. You can also give her yogurt, (creamy yogurt can easily go into the PEG - would avoid any with fruit chunks) and you can pick up live cultures at most health food stores, it is called acidophilus (same stuff as in yogurt, just in a pill) In fact, Jim took antibiotics after his PEG placement, so I gave him acidophilus which I ground up and put in his PEG...
Call the doctor, have your local pharmacy number on hand, to give to him, and tell him your mother is quite through being uncomfortable and you would like that prescription called in ASAP.
Even if it turns out to have cultured as something other than Yeast (candida) it won't hurt to give your mom acidophilus, I know women who take it regularly to help prevent yeast infections with no complications.
Andrea - wife of Pals Jim

 

[kepi]

Hello Andrea,
I called the Dr.'s office 2 times on Friday and each time they said a nurse will call back and I never heard back. I called again today and they thought I wanted to know about her INR, I said no it's about the lab results from the culture, so a nurse gets on the phone talking about the UTI and again I said she has a vaginal swab....Finally her Dr gets on the phone and asking me questions and he finally tells be she doesn't need an antibiotic unless she is showing any symptoms like a fever or pain.....She says she doesn't have any pain down there and no signs of a fever. She has a Fentanyl patch-the one that is 75 mcg/hr and also she takes Hydrocodone so how do we really know if she has pain or not. The Dr. told me they got the lab results @ 12:01pm today 12-29-08, he said it doesn't normally take that long and doesn't know why it did. Were going to try the acidophilos & yogurt. Do I need to mix the yogurt w/ some water when I give it to her through the syringe? Thanks again for all the advice.....I hope everyhting is going well for your husband too.
Debra

 

[brendapals]

Hey kepi-
Yes, candida is what it sounds like, and surely by now the culture has grown out, and they have given you the script for your mother.
It does sound uncomfortable,
keep us posted,
Hugs to you,
brenda

 

[brendapals]

well kepi, that was weird,

Somehow, I missed a whole page of posts, so the one right above this one is outdated!
sorry about that.....

I think your best bet would be to take the yogurt and acidophyllis and put it in the blender with water or cranberry juice and make it thin that way. I'm not an expert on peg tube recipes though, so hopefully, someone else will chime in.

wishing you the best,
hugs,
brenda

 

[kepi]

well kepi, that was weird,

Somehow, I missed a whole page of posts, so the one right above this one is outdated!
sorry about that.....

I think your best bet would be to take the yogurt and acidophyllis and put it in the blender with water or cranberry juice and make it thin that way. I'm not an expert on peg tube recipes though, so hopefully, someone else will chime in.

wishing you the best,
hugs,
brenda

Hello Brenda,
Thanks for the recipe, I will give it a try. I read your post on my email and was a little confused about it so I went to the ALS forum and read your 2nd post....That was funny!
Take care,
Debra

 

[andyvaughn]

Debra,
Does your mother have itching/burning, this is going to perhaps be a bit graphic for some, consider yourselves forewarned. Yeast infections typically produce a whitish, thick discharge, that is very itcy. You said it was green and foul smelling, which concerns me for something other than yeast. I would call the doctor back, and tell him specifically about the color and odor of the discharge, and that your concern is that it could turn into something systemic if left untreated...
Your mother may not notice the pain/itching due to the fentanyl patch, but IF the discharge is consistent with yeast, you could get an over the counter treatment, used in conjunction with yogurt. Yogurt is really a preventative measure, helps prevent yeast infections when taking antibiotics. Yes, you can put thick stuff in a PEG, like apple sauce and yogurt, but I prefer it be more liquid. Put it in the blender (NO FRUIT CHUNKS UNLESS WELL BLENDED) and just take it's consistency down to something more like milk.... then push thru the PEG with a syringe, followed by a generous amount of water to flush.... you may have to hold the clamp open as you push the yogurt thru. However, if it is yeast, use the over the counter stuff, I don't know brand names, but any drug store pharmacist can help you.
I don't like how your mothers doc is just writing this off... your mother deserves to be comfortable. I have found that living with ALS and the medical community is similar to trying to run in mud... it feels like there is resistance to EVERYTHING some days, just keep calling, gently remind him that your mother is uncomfortable, and you are quite concerned about this.... that should provoke him into actually looking at the darn cultures....
Andrea - wife of Pals Jim.

 

[kepi]

Hello Andrea,
I did tell the Dr. about the color of the discharge on Monday but I guess she has to be in pain or have a fever first before he will give her any meds. The discharge had a slight odor for about 3 days after the catheter was put in but now it's ok. There is still a small amount of discharge but we don't see it as often, but it's still there but not like in the beginning and w/o the slight odor. The Home Care RN will be her next week so we will see what she can do. She doesn't have itching/burning but I will get some of the over the counter treatment hopefully that will stop whatever is going on. I know what you mean about ALS and the medical community......it's such a horrible disease, we just want to make our loved ones comfortable until the end.......Take care, Debra

 

[andyvaughn]

Kepi, sorry you are having such resistance. It is reassuring that the odor is diminished as well as the amount of discharge.
I have had the same struggles as you with doctors, I can't even get a local doctor to see my husband as a primary care... I tell them he has ALS and they all say NO WAY...so we have to drive into Los Angeles for anything/everything. (about 1 hour drive for us)... I am finally getting used to it, and the doctors at Cedars tend to be superior in their field anyway, so probably worth the commute.
Anyway...prayers are with you and all of us.
Andrea

 

[kepi]

Hello Andrea,
I hope you see my post! My mom ended up getting an UTI & Pneumonia, do you think it had anything to do w/ the discharge? Friday morning she had a temp of 101.2 and we used the SpO2 on her and her oxygen was between 83-86% she normally runs between 90-91% w/o oxygen. She's not on oxygen all the time only as needed..We called the Home Care Nurse & they were going to call one of her Doctors to see if they would admit her...By 3:00pm we still had no answers, so we called the Home Care RN and they said just call 911 it would be faster that way...She had several blood draws, urine sample, CatScan, chest & stomach Xray... After 5 hours in ER they finally put her in ICU.. Her Pulmonologist was @ the hospital and wanted her to be in ICU because of her respiratory problems. He has always told us "I just want to make your mom comfortable", we are so lucky to have him as a Doctor. I only wish her Primary Doctor had the same attitude as her Pulmonologist....Around 12:30am my sister noticed my mom looking up @ the ceiling(which was an odd thing for her to do)we went to her bedside and there was no response, it was like she was frozen w/ her eyes looking up @ the ceiling, we were so scared..They said her blood pressure got down to 68/28, they finally were able to get a response out of her..I thought she was going to die....I'm leaving for the hospital w/ my sister, my dad stays w/ her in the mornings and we spend time w/ her in the evenings... I just wanted to update you on my mom...
Take care,
Debra

 

[andyvaughn]

Oh boy Debra, I am so sorry. The UTI could certainly be related to the discharge, the pneumonia could be any number of culprits, does your mother take anything by mouth? She could have aspirated and gotten pnuemonia that way, which is the most likely case scenario.
That blood pressure is alarmingly low, did they give her fluid bolus via her IV?
I am praying for her speedy recovery, and hope that the primary care doc gets a lecture from someone, your mother deserves better... I don't like him much. I know how hard it is to get a good doc though, I have to drive my husband an hour just to see a decent doc....
Andrea - wife of Pals Jim

 

[kepi]

Hello Andrea,
We just came back from the hospital and my mom is just doing ok! They have her on morphine so it makes her really sleepy. She doesn't take anything by mouth because of the Bulbar ALS, she had to quit eating just over 3 years ago. My mom also has a trach so after each suction I always look at the stuff that comes up and it's always the frothy white color. I know it's common for ALS patients to get pneumonia-- the last time my mom had it was 1 year ago....About the fluid via IV (I hope I'm explaining this right to you) I thought they said it was saline? They started her on that as soon as she got into the Ambulance. I'm sorry to hear that your husband can't find a local Doctor, why are they so afraid of ALS patients? If Doctors aren't willing to help people who are sick then they shouldn't be Doctors.....It's horrible and wrong to turn people away because of ALS, it makes me mad too! Thanks for writing back and I hope you and your husband are doing well.
Take care, Debra

 

[andyvaughn]

I am so happy to hear about your mother Debra...
I don't know why we have had such poor luck with doctors here..could be any number of issues, from laziness, fear of liability, fear of ALS itself. We did find one locally who was willing to see Jim, but he was so indifferent...I just knew he wasn't the guy we wanted on our team when the proverbial caca hits the fan. The doctors at Cedars, where Jim goes to the ALS clinic, are all very wonderful, at least so far, and not afraid of ALS at all. However, it is a teaching institution, and somehow those docs seem more comfortable with complex cases. So, unfortunately, we are driving to Los Angeles at this time every time we have an "issue" with Jim, but I know he is getting good care, which is really what matters most...
Either way, just so glad you mother is doing better....

Andrea

 

[CindyM]

I am glad your Mom is doing better, too, Debra. That must have been scary!

 

[kepi]

Hello Andrea,
We just came back from the hospital and it seems like all she does is sleep. I don't know how much longer we have! I know in my heart the end is almost there, who knows if she will recover and if she does how much longer. I hate this disease so much, to see someone go through this and there is nothing you can do is emotionally draining...it's so sad.. I put your name in for a friend request ( I hope I did it right) It is just easier to talk to other people who know what your going through...So many people out there have no clue what ALS is and I feel like this forum helps out a lot. I'm going with my sister on Monday to talk to hospice, just to see what they have to offer... We don't want my mom to pass away at a hospital...she needs to be at home (when that day comes )and be around her family....
Take care,
Debra