Jason's In Distress

[Jason's Dream]

Jason has bad trapped gas. I am getting so frustrated with one of the nurses on call, "Diane". This all started at 4 am. At 6 am I was calling her, but it was like pulling teeth for her to get here. He was moaning and groaning in soo much pain. He was saying his belly hurt. She kept on saying "Well, I'll hafta put some clothes on, then I don't know what would be open this early.. blah blah blah". UGH! Anyways, she finally gets here. Gives him 30 CC's of Mylanta, pushes on his belly, and says she think it is trapped gas, kept on admonishing me for doing something a pharmacist said was okay to do, etc. She leaves saying she would tell "Angie" (his regular nurse) what is going on, and that Angie would be out in a couple of hours. Meanwhile, he is in excrutiating pain. Angie gets here, and so does Vickie (his nurse aid). They turn him back and forth several times to get him to aleviate the gas but no go. They check for impaction, there was none. They gave him 2 enemas, and still that doesn't alleviate the trapped gas. They have given him 7-up, mylanta, and finegran (nausea medicine). Currently they have me giving him the finegran every 4 hours and roxanol (subcutaneous morphene) every hour. At one point Jason said his stomach was hungry, and asked for a boost to be put down his tube. So I put a boost, and not even a few minutes later, and he vommited it all up. I called his nurse, Angie said she was still over 30 minutes away, but this Diane was 15 minutes away and said she would call her. Diane FINALLY called back and did absolutely NOTHING! Here Angie had said that they have done everything they can at home, if it doesn't get better, the next step is taking him to the hospital. Diane never came over (even after he had puked) and never talked about taking him to the hospital. I had to ask, so, what should I do.. food? what kind food? etc.... I am soo frustrated and don't know what to do. Jason is out of it, for most of the hour, until it is about time for another dose of morphene, then he is a clock watcher, pees, then is out of it again. I dunno if I should take him to the hospital, or if I should switch hospice agencies. If this is a sign of the type of care he is going to get (re: Diane), I am serious considering checking out other hospice agencies. Sorry for the long vent. Just really worried about Jason, hurting to see him in soo much distress, and sooo frustrated and a bit infuriated about the lack of care from the on-call nurse.

 

[Katie C]

When you have a moment call the hospice and ask to speak to the supervisor and give him/her an earful. We have found with most hospice companies that accompishes a LOT.

 

[Phil's wife]

I hope by now Jason has relief of the pain. Phil's doctor told us about pear juice -- it is the best stool softener! Phil was having a very tough time with constipation and impaction in his last few weeks. Once we started the pear juice a few days later he was doing so well I had to cut back a bit. I found the pear juice at Harris Teeter, she said it could also be found at Trader Joes. It really works wonders -- better than the prescription softeners and laxatives. I believe we started with 12-16 oz a day, then after he was regular again cut back to about 8oz daily.

Hope hospice is doing their job now...that lack of support is inexcusable.

Prayers for you both,
Stephanie

 

[laurel]

In the my past nursing days when all else failed for bad flatulence, we used a rectal tube and it often worked well. Maybe ask about getting the doctor to order an rectal tube and have the nurse insert it. Good luck. (It is just a lubricated catheter tube that it gently put in and left for a while until the gas passes).
Laurel

 

[Jellycat]

Oh gosh, gas is so unbelieveably sore. It used to make my mom cry. I'm sorry, don't remember if Jason has a peg tube. If so, open the tube - probably some aweful looking stuff will come out after the air. I never found a good solution for gas though what I would do for a baby to wind it (rubbing on the back and some tapping) seemed to at least provide comfort. Hang in there....sending hugs and love.

 

[LizT]

Honestly, I would do both. Take him to the hospital AND change hospice agencies. If he hasnt had relief after all that has been done, there may be something else happening. And there is absolutely NO reason why you should have to stress over the hospice when your hubby is in this condition. That is why there is hospice to begin with- to help take AWAY stress during the end of life. They just add to it.

Here's a though- could the morphine be giving him stomach issues? I know he needs it- maybe the doc could prescribe something to help?
Praying for you guys.

 

[brooksea]

Can somebody get some Colic Calm for him? It works for babies (not always, but you never know). Maybe place one of those heat pads that you heat up in the microwave that provide moist heat, at least for a little relief from pain?

 

[valg]

My husband had three similar attacks. The Dr said it was colic. He was in agony and sweated profusely - he and the bed were drenched. Did not want to lie still. He found the best position was sitting leaning right forward. The Dr sedated him but it took many hours to pass each time.
Hope he has recoverd by now.

 

[Jason's Dream]

Thank you all for your support and for the advice. I am seriously considering switching agencies. I know this wasn't a life threatening situation, but what happens when it is? If Diane is the nurse on call, I know I will not have any support through it all, much less be in a good emotional state, and with my feelings towards her now, I am not sure I want her around at that point. Today the nurse aid came to give Jason a bath, said his nurse (Angie) was sick, and that Diane would be over. Asked if she had even called. We got NO PHONE CALL and she didn't even come over! He is doing much better today, no thanks to hospice. I gave him a half cup of beef broth, and he has had 2 bananas today and some gatorade. I had a heating pad on him all night. Last dose of morphene was 8:30 this morning. Just really infuriated by the hospice agency and researching other agencies. Thanks again.

 

[Zaphoon]

Stuff like this makes me mad!

I'll bet I could set "Diane" straight! Just give me 5 minutes alone with her and a horsewhip!

(I have an excuse - I'm in the middle of another symptom flare-up...)

 

[sharona]

I know that bananas can cause stomach problems.Every time Larry eats them he say's he gets a stomach ache.Just a thought.
Sharon

 

[Jason's Dream]

Thank you. Yeah, I am definately looking into other agencies. I gave him bananas, because it is on the BRAT diet that I give our children when they are feeling sick and trying to get thier system back on track. So sorry to hear of your system flair up.

 

[notme]

This may sound simplistic, but have you tried Gas-X? It might help. If his stool becomes thin-or watery--that can be a sign of impaction, by the way. Hope today is better.

Do they have hospice of the comforter where you live?

 

[notme]

No idea why there is a huge facebook button on my post above

 

[Jason's Dream]

Thank you dear friends.

Well, I have good news and well... not so good news, but hopefully we will get things turned around.

Good News:

Jason is doing better. Yesterday he ended up drinking 1/2 cup of beef broth, 2 bananas, a bowl of applesauce, gatorade, and then had dry toast dipped in beef broth. Today he had scrambled eggs, toast with light butter and then beef and noodles over mashed potatoes and peas and gatorade. He says his pain is gone (in his belly) but his neck has been hurting him today. So, I am beyond tickled that he is doing soo much better.

Bad News:

Well, Jason's nurse, "Angie" came over today, she was in tears. They have cut her hours, and have cut (only) Jason as her patient. As of the end of today, "Diane" was to be his full time nurse. Yeah, that didn't go over well at all. I called and said I needed to speak with the owner (Tami), and they said they would give her the message. Then I get a phone call from "Diane" asking if there is anything she could do, I said no, I needed to speak to Tami.

At the same time, I called another agency and the admitting nurse came out and we talked. She encouraged me to give the current agency a chance to rectify thier wrong and if not the they would be glad to take us.

After that phone call, I got a call from Tami, who, after she heard my complaint, asked if we would be okay if "Angie" be Jason's nurse full time and also answer all on-call calls for him? I said yes, she said it sounded like a communication problem and that she would sit down and talk to Diane and Angie and then call me tomorrow at 11:30am.

So that is where that stands. If it doesn't get rectified, then on Monday we will be signing with a new company.


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More family drama:

All along I have told everyone (friends and family alike) that if you want to visit, please text or call first. I have no problem with anyone visiting, just please text or call first, as we are still trying to do things together as a family, have hospice nurses coming in, as well as if he isn't doing well, etc.

Well, tonight I got a text from FIL and I quote:

"Just wanted you to know that Paul (Jason's grandfather) asked Pat (Jason's mom) to go see Jason with him. She wouldn't do anything to make you mad cause she wants to see Jason. Everyone knows you don't like her. I don't know why. She's never said anything bad about you. Bud (FIL)"

Hmm, where do I even start with this? She has ruined my reputation, has ran her mouth more then once. Has lied. Has over stepped her boundaries on several occasions, etc. Yet, I have not said one bad word to or about her, ruined her reputation, or tell her I don't like her. I have never said she couldn't visit, just please call or text first. She hasn't done that. I set up Fridays from 1-4 for her to come have a 1 on 1 visit with Jason. Last week, Paul came and she came with him on Thursday. Well, since she came on Thursday instead of Friday, I saw that Friday was open, and Jason and I went out on an amazing date. But of course, with his stupid family, we can't be happy or drama free. Jason doesn't know about the text FIL has sent. I want to keep him drama free. He and our kids are my main concern, not my inlaws.

Just soo fed up with this crap. Its a non-stop with them. I am soo ready to be done with them.

UGH!

Okay, rant over.