Mystery: Sudden Worsening P.E.M. - becoming desperate

[Learner1]

@Howard Very concerned for you. Given what you've described, it's unlikely a hospital would do nothing for you.

It might be worth seeking care through the emergency room, if you go in with a written down list of complaints.

 

[YippeeKi YOW !!]

Given what you've described, it's unlikely a hospital would do nothing for you.

I agree, altho based on your other experiences, it would still take a fair amount of pushing/insisting on your part.

It would also be helpful if your LPW (Loving, Patient Wife) could accompany you at least initially, and establish your issues very clearly with that shift's ER charge nurse, who'll then hopefully be able to organize your treatment and care, and also request the name of the CNO (Chief Nursing Officer). Your wife could also get the name of your subsequent attending Dr, who would be in charge of, and responsible for, almost all phases of your care while in the hospital, even those that are delegated to other specialists.

Patiently writing down all those names and titles in clear view of the possessors couldn't hurt, so your wife knows who she should talk to and they know that she has that information.

It might be worth seeking care through the emergency room, if you go in with a written down list of complaints.

Drs and nurses, nurses particularly, appreciate any effort you make to clarify and prioritize your issues, within limits of course.

A written list of the things that have brought you there (possible feeding tube problems, need to replace feeding tube which is long past its 'Use By' date, bump on spine that could be a deep infection and is causing you a lot of pain, sore area on your flank, blood tests to determine other things that might be contributing) could be reviewed with the ER attending with your LPW filling in the finer strokes.

EDIT .... for what used to be typos and now are entire omitted words. Damn. Just damn.

 

[bensmith]

I hope you find safe harbor my friend, you are a very good man and deserve to. Thinking and hoping for you bud.

 

[lenora]

Hi Howard....Sorry to hear of your difficulties; didn't see them until this a.m.

You've received some excellent advice (as you know), but you definitely need to have this all written down, call the Dr. who seemed most helpful and yes, it does sound like an infection of some sort or another. As I recall from Whitney's hospital forays (to change tube), he took small doses of abilify and was given fentanyl (&?) for the actually procedure...anyone with knowledge of this?

I wouldn't delay in having this taken care of, especially with the bedsore (if it is that) giving you difficulty. And Judee's right...your wife does deserve to know what's going on...imagine if she receives a call out of nowhere from the hospital.

For the most part, I've had decent treatment at ER rooms. Of course is depends upon how busy they are, onrush of clients, etc., but most will give you warmed blankets as many as you want. Take your own pillow b/c the gurney's are often uncomfortable and that will help, also ask them to put the bars up so you don't have to worry about falling off. Don't forget to take the pillow back home...I've done that, too.

Please tell the org. that you're in an emergency situation and I'm sure that something much faster can be arranged. My guess is that you'll be kept in the hospital b/c at the very least your fluids sound of out of balance and that could account for your intensified weakness.

Yes, you've been a very patient patient but there does come a point when you have to bare your teeth somewhat. From the sound of things you may also need antibiotics and a diet change, but we'll let the experts decide that.

I sincerely hope that you don't have to spend too long waiting for a bed, or doctor (more likely that you'll see plenty of doctors). As suggested, do make a list of questions, pertinent information, how long since your last tube change, internal pain....if nothing else you should be given a thorough work-up and then you'll see the PT folks. See, we pay for these services in more ways than one! I'm willing to bet that your fluids are at least out of balance and you do have an infection of some sort going on.

Oh, the info you put into your phone. Always take a fresh copy with you, changes in medicines, food, that sort of thing and make certain that your wife, caregiver and son all have copies. I have no doubt that you'll receive care this time. Go and let yourself fall into the hand of others. I wish you well. Get back to us when possible. Odd, I had thought of a pilodinal abcess (cyst) when you first complained about a bedsore....but well, I didn't mention it b/c I didn't want you to worry even more. I agree....just focus on the things that are bothering you, don't look things up online, you can always do that later, but really try to let your body "talk" to you. And the doctors. Get back to us when you can. Yours, Lenora xo (for comfort).

 

[Howard]

Perfect. Appreciate all the advice/recommendations/ammunition. I could probably do this all myself, except that it REALLY helps having everybody chime in. Sometimes there are far too many ducks floating on the pond.

I currently have the ambulance service on "will call" .. waiting on caregiver. She just woke up and is putting herself together.

Wife will be available after work, but said she could squeeze out of the office sooner, if needed. Timing should work out fairly well.. not too much of a gap between my arrival and hers.

I also put together a "brief medical history" document (bullet points/one page total).. briefly detailing the issues at hand.

H

 

[YippeeKi YOW !!]

@Howard ....
Excellent !!! Short, succinct, to the point ...

Great pic .... you;ve gained some weight, cut you hair a bit .... try to look sicker when you hit the ER ... ...

Mama used to remind me, as she created yet another beautifully balanced, artistically pleasing dinner plate, that we eat with our eyes, too .... well, Drs evaluate with their eyes, as well, and often don't go any further in their inquiries ....

Thank you for posting, sweetie .... a girl worries .....

 

[Judee]

Sending hugs and prayers, @Howard.

 

[Howard]

Was getting ready to go to the hospital. They called. Won't be able to do the feeding tube until Thursday morning, first thing.

So now, do I make one trip to the hospital right now to have my bedsore taken care of... and then make a second trip Thursday morning?

Or do I hold off on everything until Thursday morning?

Right now I'm leaning towards going to the hospital tomorrow morning for the bed sore, and then again Thursday morning for the feeding tube.

Stuff is complicated.

Ugh.

For now I'll reapply some turmeric powder on the tailbone and also apply heat to perhaps draw in some antibodies or white blood cells or whatever it is that gets attracted to heat, infection, and/or fever.

H

 

[andyguitar]

Right now I'm leaning towards going to the hospital tomorrow morning for the bed sore, and then again Thursday morning for the feeding tube.

Think I'd do that just in case the bed sore is getting out of control. Also I suppose there might be a chance someone at the hospital will have a look at the area around the feeding tube while you are there.

 

[YippeeKi YOW !!]

Thee's another option, tho it requires some .... finessing.

Go to the hospital tomorrow, let them poke around your tailbone issue, and make sure you stress the flank pain which I think is on the adjacent side. Mention all the stuff that @Zebra generously shared with you.... the possibility of a pilonidal cyst that may have burst subcutaneously thereby causing potential mayhem where it can;t be easily detected, as well as the potential for a deep down dermal sinus tract issue.

Throw into this persistent mentions of the many accidents that you've had with your feeding tube, starting with your grandson yanking it clear out of the stoma, emergency make-shift repairs done on it, anything that you can recall. They're responsible for any work done on your feeding tube and, more importantly, any essential work, (like the feeding tube clean-up at the stoma and the replacement that's clearly necessary) that's not done along with any repercussions stemming from that.

I know you don;t want your caregivers in the hospital, or anyplace else for that matter, to dislike you, and as a result, you hesitate to request, or pleasantly demand, attention that's necessary for your comfort and well-being. But if you dont do that, they'll treat you the way they did the last few times, so take the lesson and run with it.

The point is to make sure they keep you overnight after tge initial probings so they can expeditiously install another feeding tube and get your blood work back before sending you home, only to have you have to come back the next day .....

See if your LPW can do a Google on your hospital and get the names and titles of the heads of various departments you might be dealing with, like the ER, Gastroenterology, Neurology, etc, as well as their primary assistants. Ditto the Head of Nursing, the hospital administrator, and (don;t laugh) your congressperson's contact number.

Based on past experience, you may have to kick some ass to get anything done, and the sooner you start doing that, the more pleasant you can be about it before having to get really snappish ....

I dont know how well you remember all of your hospital stays, but I still have very vivid memories of one of the longer ones, and none of them are pleasant ...

Sorry .... I'm very tired, and trying to get all this out before I have a mini crash, so if it seems too forceful, please to forgive ....

 

[Rufous McKinney]

you may have to kick some ass to get anything done

I hope you can stay there and get these matters resolved effectively and thoroughly.

So somehow use your calm, centered, charm to: stick up for yourself there.

 

[Judee]

So now, do I make one trip to the hospital right now to have my bedsore taken care of... and then make a second trip Thursday morning?

I would hope that if they take a blood sample and your white blood counts are high they would decide to keep you there anyway.

Like @YippeeKi YOW !! said, I think that's going to take pointing all you've been going through lately out to them (minus the ME mentions, unfortunately.)

I know you're probably like a lot of us and don't like to advocate for yourself but you'd do it for your Mom or your wife so please do it for yourself too. (I know, some of that is that we don't know HOW to advocate for ourselves.)

Anyway, I could be wrong but I'm with the others and think you should try going sooner rather than just later. Hopefully it won't end up being two trips.

 

[Martin aka paused||M.E.]

Feeding Tube

It's also possible that I have bacterial or fungal issues with my feeding tube, as the odor emitted from it (upon opening) doesn't smell quite right

Howard,

I'm so sorry you have to suffer that much. Most of it happened to me when I got extremely severe but I wouldn't be able to post my problem here.

But I have a feeding tube too. Who cleans it? Because an infection would mean that you have to change the whole tube in the ER (been there done that). If you have pain around where the tube is or fever you definitely have to call the emergency. You're risking a sepsis!

Best wishes,
Martin

 

[Howard]

Howard,

I'm so sorry you have to suffer that much. Most of it happened to me when I got extremely severe but I wouldn't be able to post my problem here.

But I have a feeding tube too. Who cleans it? Because an infection would mean that you have to change the whole tube in the ER (been there done that). If you have pain around where the tube is or fever you definitely have to call the emergency. You're risking a sepsis!

Best wishes,
Martin

Far too many words. No urgency in reading or responding.

If not inside the feeding tube, I suspect I have a systemic fungal infection (or similar).

Example: if I stop taking my probiotics for a few days, my fingernails begin to warp and become discolored (nail fungus or nail psoriasis symptoms, not sure which).

Antibiotics have never been impactful either way.


Anyway, my stoma looks good (assuming you have a J-tube, as well), no redness, no fever either, but I shall make them aware of a possible infection while I am in the hospital (Thursday for the tube replacement).

The pain in and around the stoma area has diminished. I cut back on formula and doubled my water intake in the past 48-hours.

I saw that you've utilized fentanyl. I'm going to do it without this time.. in order to avoid an accelerated heart rate and hour's long heart palpitations afterwards. I've done the procedure without pain meds, and sometimes it's not too bad.

Question:

Do they ask/require that you stop using your feeding tube at midnight, just prior to your tube replacement? No food. No water.

I'm always reluctant to shut down because I am minimally hydrated, taking in only 24 to 32 fluid ounces per day and I hate getting further behind.

Sorry about all of the questions. I'm just curious. No response necessary or required.

Thanks, for responding,
H

 

[Martin aka paused||M.E.]

Far too many words. No urgency in reading or responding.

If not inside the feeding tube, I suspect I have a systemic fungal infection (or similar).

Example: if I stop taking my probiotics for a few days, my fingernails begin to warp and become discolored (nail fungus or nail psoriasis symptoms, not sure which).

Antibiotics have never been impactful either way.


Anyway, my stoma looks good (assuming you have a J-tube, as well), no redness, no fever either, but I shall make them aware of a possible infection while I am in the hospital (Thursday for the tube replacement).

The pain in and around the stoma area has diminished. I cut back on formula and doubled my water intake in the past 48-hours.

I saw that you've utilized fentanyl. I'm going to do it without this time.. in order to avoid an accelerated heart rate and hour's long heart palpitations afterwards. I've done the procedure without pain meds, and sometimes it's not too bad.

Question:

Do they ask/require that you stop using your feeding tube at midnight, just prior to your tube replacement? No food. No water.

I'm always reluctant to shut down because I am minimally hydrated, taking in only 24 to 32 fluid ounces per day and I hate getting further behind.

Sorry about all of the questions. I'm just curious. No response necessary or required.

Thanks, for responding,
H

If it's a case of emergency they remove the tube even if your stomach is full. Otherwise you have to fast for 12 hrs

 

[lenora]

@Howard.....I think your best chance of being hospitalized (instead of two ambulance rides) rests with a doctor. After all, he's the only one who can admit a patient.

You may need more than one round of antibiotics...that's very common with people with problems. Also a systemic med for fungal or yeast problems. I'm waving goodbye to you....good luck, too! Yours, Lenora xo

No need to reply.

 

[Judee]

I'm always reluctant to shut down because I am minimally hydrated, taking in only 24 to 32 fluid ounces per day and I hate getting further behind.

Another reason to go sooner rather than later so they can start you on IV hydration in advance of the tube procedure.

 

[Howard]

Update

Busy morning. Scheduled the ambulance for 7 am tomorrow. Tube replacement 9 am (gives nursing staff ample time to investigate the bedsore status).

Cancel that… they just said they would admit me into ER first, address the bed sore issue, and then decide when they can do the feeding tube replacement.. sometime that same day or within the same visit if I am kept overnight and beyond Etc.

Hoping they can do something with the gastrointestinal related symptoms, but that's unlikely unless x-rays reveal something obvious. Or unless I am intensely in pain at that time. The right flank pain has diminished substantially in the past 24 hours.

Helping Hand

Caregiving accompaniment initially fell through, however, the company's office manager offered to come with me for the entirety of the visit. Or until my wife is able to show up later in the evening (if it comes down to that).

Bedsore wound (or whatever it is that's back there) is much improved today. Last night there was burning and stinging pain (to the touch), so it seems to me the wound had opened up again (this time, longitudinally, instead of the previous small oval shape.. felt like skin being dried out and cracking).

Applied generous amounts of turmeric paste, and within a few hours symptoms improved. Problem is, it doesn't stay that way for long.

Unsolvable?

I am hoping that by resolving these issues, some of my energy reserves will come back to me. It's currently very much a struggle when it comes to moving my arms and legs and holding my head upright (at all). The other stuff, I am not so worried about.

My generalized fear has much to do with how decidedly exhausted I will be for an extended period of time. Yes, that's the part that's most overwhelming to me. And that's why I need to find some semblance of acceptance with my soon-to-be diminished state.

My wife's go-to encouragement? "It hasn't killed you yet.. you always seem to survive." But then I'll be a smart ass, replying, "That which kills you, DOES NOT make you stronger!" But she's right. We're all still here. Mostly.

So here's to Acceptance, and the warrior mentality.

Yes, one inspirational method is to pretend that you are a superhero and you have super powers. And then, utilizing that point of view, and perhaps imagining any particular ordeal turning it into a future movie script, or something of that nature. That may sound silly, but I've actually used that technique before.

H

 

[andyguitar]

Applied generous amounts of turmeric paste, and within a few hours symptoms improved. Problem is, it doesn't stay that way for long.

Must be acting as a pain killer, but not much else i dont think.

 

[Rufous McKinney]

the company's office manager offered to come with me

Wow, will wonders never cease!

My generalized fear has much to do with how decidedly exhausted I will be for an extended period of time

Yes. But your warrior status and past awards for Best Unsupported Actor...will serve you well.

any particular ordeal turning it into a future movie script,

Yes- I do this all the time, with mixed results.

The last two jury duty sessions (15 years ago), during which I had full bore panic attacks, and the discovery that a Cystitus ridden bladder is just never going to be helpful on Jury Duty- I had the whole script written out. About 20 pages of compulsive notes on jury duty- and the excuses therein for how we cant be civic, or sit in judgement of our peers- well darn all those notes burnt up.

Now I only remember 39 of the 140 excuses. (not a movie, but a New Yorker article featuring my mother, who also never achieved jury duty status: "My father was a Policeman"- my mom would say and That was that for jury duty.

I'm sure this has something to do with staring in minor roles in outpatient surgical procedures.