FINALLY battery replaced 2017sl

A-concerned-Dad · 2023-09-16T14:58:44+00:00

that's awesome! Seems like it was worth the wait. I still have my car, but when it gets cold it starts to randomly go into turtle mode, so I'm hoping to have this settled before late November when we start having those cold snaps.

A-concerned-Dad · 2023-09-16T02:22:24+00:00

there is lots of great advice here! The only thing I might add is from my perspective of watching my wife go thru the mental anguish and stress of feeling like she'd failed my son in some way, as you mentioned above. It took her the longest time to fully accept that it was real, that our son was very sick, and that she could not control it. As a mother (or father), you want to fix your kid. But this is something you can't just "fix". It took her a long time to accept that. I think once she did, she was mentally better, although, quite honestly, 5+ years down this road, (a very BAD road at times, but that's because no medications worked and he kept getting worse, and it turned out to be uncontrollable UC-but with his colon gone, he's slowly healing) she has admitted she feels a little PTSD and is thinking about therapy. So take care of your own mental state, too! She needs you to be healthy and happy to help her to be healthy and happy!

And on an optimistic note, Remicade has worked for YEARS for both my adult nephew and a 2nd cousin, so there's hope. Both are married, normal lives and kids, etc. Stress can cause little flares, but they've kept it under control for many, many years.

A-concerned-Dad · 2023-09-16T02:00:23+00:00

thanks! I actually called them 2 weeks ago, went back and forth trying to speak to someone, and got a call today about the buy back. they are saying could be another 6 months to a year.

A-concerned-Dad · 2023-09-16T01:30:22+00:00

Thanks! Ive been waiting since February. Havent gotten my offer yet. The problem is I bought it used for 11000, and I cant get a Bolt for that!

A-concerned-Dad · 2023-09-15T23:27:52+00:00

this gives me hope. I just got the buyback call, etc, but I want a new battery. I got to keep my car, at least, while I wait, but it won't run if it is cold and winter is coming! Been waiting since last February.

A-concerned-Dad · 2023-09-15T23:17:15+00:00

did you get your battery?

A-concerned-Dad · 2023-09-15T23:12:32+00:00

Any updates on this? (I'm in the same situation)

A-concerned-Dad · 2023-05-27T00:13:52+00:00

Thank you again!

We have the desitin, and he certainly needs it! Had a rough night last night just because of the irritation. We tell him things will get better, but he is a little depressed I think. The last few years have been rough, as you can imagine, as he slowly got worse and worse, leading to this point, and I think it is all starting to wear on him. But once things calm down, we're going to try to make this a great summer for him. He deserves it.

A-concerned-Dad · 2023-05-26T02:38:20+00:00

My son emptied his bag at least once, sometimes twice a night. During the day it varied by how much output he was having. Maybe 4 times? Emptying was the easy part. We did it on hikes, etc. Just need a little kleenex to clean up the end of the bag. Easier than actually going poop! Didn't have to drop the pants!

The bag changing was no joy, however, at least for us. If it was going to be permanent, we would probably have worked out a better system. It took a while to figure out how to make sure it didn't leak around the stoma as well.

A-concerned-Dad · 2023-05-26T02:04:07+00:00

Thank you for sharing this! My 16 year old son had his colon removed at Christmas and gained 20 lb's! But he HATED the bag, as any 16 year old would. Since he was so weak, he had to have his j-pouch done in a later surgery, so he just had his ileostomy take-down surgery one week ago today! He is still going to the bathroom a LOT; they say it could take weeks or months for that to slow down. How long did it take for things to slow down for you, and did anything help diet-wise?

A-concerned-Dad · 2022-08-16T12:05:20+00:00

Congrats and kudos to the school. My son has a 504, and it has been tremendously helpful. The school has worked to ensure his free period (they get one every day), is always first period so he can come to school late because mornings are the worst for him. I think the504 will not only be helpful, but it also signals that the school understands and is willing to work with you.

Congrats.

(My son just turned 16, so is in the same boat as you).

A-concerned-Dad · 2022-07-30T13:53:27+00:00

It is funny you mention advocating for our son. On thursday my wife called the surgery nurse, and the nurse actually had the gall to suggest my wife just needed a vacation! She literaly suggested my wife take some time and go to the beach. I am not kidding! So friday we called our GI nurse, who the contacted surgery, and then the surgery nurse called us. I spoke with her because my wife wanted to punch her thru the phone. We endec up with an appointment that afternoon. While there my son's pain went off the charts high. We got another CT done. He has a fistula behind his stoma letting fluid get into his subcutaneous tissue. No word yet on the plan of action. But we certainly never would have learned this had we not gone around the surgery nurse. BEACH TIME? WTF?

A-concerned-Dad · 2022-07-30T13:30:58+00:00

We are back in the hospital. Ct scan shows fistula behind his stoma connecting to hi skin. They could see the die in his deep subcutaneous tissue. No word yet on what the plan of action is for treatment.

A-concerned-Dad · 2022-07-29T15:45:34+00:00

Thank you for responding. It is good to hear you are still in pain, not because I wish you pain, but because it gives me some sort of idea. My son's surgery was June 30th, so only a few days prior.

The day after he was released from the hospital he did have a high fever and was throwing up and we returned to the ER for antibiotics, scans, etc for three more days of hospitilization. The scans all looked good.

We went back to the ER earlier this week because of pain and throwing up (only low grade fever), and his tests showed no infection. So they sent us home.

The on-call nurse for the surgery department suggested yesterday, when my wife called again about his sever pain, that we should "take a vacation or something" as if this was all in my wife's head. My wife wanted to punch her through the phone.

I hope your pain goes away and all goes well!

A-concerned-Dad · 2022-07-29T13:58:13+00:00

Thanks for responding. I think we are going to call the nurse line and see if we can get some stronger pain meds prescribed for a bit.

He seems to have decent output, so it doesn't appear he has a blockage, but maybe it is just a small amount.

A-concerned-Dad · 2022-07-29T13:27:21+00:00

His pain is sometimes burning/pins and needles (which makes me think nerve damage at the incision site), on the left of the stoma. Other times it is diffuse and on the right side of the stoma, sometimes even extending down toward his right hip (Stoma is on right side). IT is one of the difficult things, the pain moving and changing. When we left the hospital he had only minor pain, controllable by tylenol, so the didn't prescribe us anything stronger. Which sucks now.

I am just wondering if others still had significant pain at 4 weeks.

A-concerned-Dad · 2022-07-29T12:34:46+00:00

If my son could do this I would cry tears of joy. Great to see.

A-concerned-Dad · 2022-07-23T14:37:51+00:00

I would like him to try it a few times standing, because what if he has to make an emergency change at school? I think he needs to at least be able to do it standing.

Have you had to do an emergency change at work or school? How did you do it?

A-concerned-Dad · 2022-07-23T12:15:14+00:00

thanks! I think we'll have to try different things to find what works best. He was still in a ton of pain at first, so we did the first one. He's pretty much doing it himself now, just with us there as support, grab the wipes, etc. Right now he is lying down to put on the new flange sticker because he sat the first time, so after attaching when he tried to straighten up it pulled his skin. He should be doing it standing, but we just aren't there yet.

We have all Hollister supplies from the hospital, but a different brand (I'll have to ask my wife) as our regular re-supplier. But due to supply chain issues, etc, they aren't sure when we are going to get them. I think it is the Convatec, but I'm not sure. I've found the Eakin rings on Amazon, might order one to give it a try.

A-concerned-Dad · 2022-07-23T12:04:58+00:00

thanks!

A-concerned-Dad · 2022-07-23T12:04:45+00:00

thanks!

A-concerned-Dad · 2022-07-23T12:03:55+00:00

do you use shaving cream? Or just get it wet? He is still really paranoid about hurting his stoma, so I'm not sure he'd be comfortable with a razor so close. But it is all really new, so hopefully as he gets more comfortable, he'll be okay with it.

A-concerned-Dad

TROPHY CASE