Raising Chickens and Special Needs Kids

Richard makes all of his decisions. We were really wanting him to go with something a few yrs. ago..he said..nope.
This is something he .. can't.. say no to if he wants to live! He understands. This line of stone will keep closing in, until there is no space in that tiny bladder.
He's home, thought there for a while they would keep him overnight. So much pain, and Richard never complains about pain, but he was in a lot..and his oxygen didn't go up, so he came home with a tank. Still has that on for today. Should be off by tonight. Doing better with pain, said no to a pain pill this afternoon. That's how he is. I told the Dr. and the Nurses..over the phone.. since I was home, that if he says he's in pain, he's in pain. He has a high threshold for pain, most kids/people that have been through a lot of surgeries do have a high threshold for it.
Richard has also been suffering with an open wound for yrs. Front lower abdomen. Has had many surgeries to clean it and close it. It reopens, over and over again. Now, I worry about this surgery, if it is opened in the waist area, just another wound to worry about keeping clean and closed. :(

The drive up there isn't considered bad for most folks..even for us back in the day. It's just over an hr. We just don't drive far anymore.
I am hoping that when this dr. reviews the report, they will get him in sooner.

When Richard got older, he started seeing our Primary Care physician, then went to the specialist needed...when needed. He comes over here when he's had surgery. We keep an eye on him. That is usually needed to be done by someone for anyone that has had surgery. At least for 24 hrs.

I have a mentally handicapped sister. I took her in when my mother passed. Had her for a couple of yrs. I couldn't handle her. Sad, but true. When it was time to put her into a home, I got guardianship .. this way, I have say as to what I want done with drs. Dentists. Therapists. I suggest something, they do it. She's 51.
 
Richard makes all of his decisions. We were really wanting him to go with something a few yrs. ago..he said..nope.
This is something he .. can't.. say no to if he wants to live! He understands. This line of stone will keep closing in, until there is no space in that tiny bladder.
He's home, thought there for a while they would keep him overnight. So much pain, and Richard never complains about pain, but he was in a lot..and his oxygen didn't go up, so he came home with a tank. Still has that on for today. Should be off by tonight. Doing better with pain, said no to a pain pill this afternoon. That's how he is. I told the Dr. and the Nurses..over the phone.. since I was home, that if he says he's in pain, he's in pain. He has a high threshold for pain, most kids/people that have been through a lot of surgeries do have a high threshold for it.
Richard has also been suffering with an open wound for yrs. Front lower abdomen. Has had many surgeries to clean it and close it. It reopens, over and over again. Now, I worry about this surgery, if it is opened in the waist area, just another wound to worry about keeping clean and closed. :(

The drive up there isn't considered bad for most folks..even for us back in the day. It's just over an hr. We just don't drive far anymore.
I am hoping that when this dr. reviews the report, they will get him in sooner.

When Richard got older, he started seeing our Primary Care physician, then went to the specialist needed...when needed. He comes over here when he's had surgery. We keep an eye on him. That is usually needed to be done by someone for anyone that has had surgery. At least for 24 hrs.

I have a mentally handicapped sister. I took her in when my mother passed. Had her for a couple of yrs. I couldn't handle her. Sad, but true. When it was time to put her into a home, I got guardianship .. this way, I have say as to what I want done with drs. Dentists. Therapists. I suggest something, they do it. She's 51.
Wow Cynthia, it sounds like you have had your hands so full over the years. I'm glad Richard comes and stays with you.

I haven't actually thought about which doctors will see her after 18....I'm hoping she can stay with the ones she has.

What is it about a wound that won't heal? Is that something he has struggled with? Is it the location? What exactly causes it to not heal? I can't even imagine struggling with that!!!

Keep us posted!! I hope he feels better soon!!!
 
The wound is where a scar was from having uriters reimplanted. He has 2 on the right side. This can happen to anyone.. be born with 2 instead of 1. His were at the wrong angle, allowing urine to back up into the kidney. Had the surgery done.
Worked great. Years later, once he started using a wheelchair, it became infected mainly because he is paralysed in that area. Skin that is paralysed does not have normal circulation. So. It can't heal right. Plus, now that he is in a chair, it is covered...by tummy! ;)
 
Richard finally posted on facebook how things worked out. Have to share, because he shared a cute photo, and because he is doing pretty well accepting the fact that something more will be done now. He loves this little dog. Here is what he shared.


Sometimes life throws you a curve ball and you end up in a place you wish didn't exist. My surgery failed. The bladder stone I have was too big to do a cystoscopy on, so the next step is to do a bladder augmentation and remove it manually. On top of that, I've had nonstop excruciating pain in my abdomen because of another issue (I'm okay there, but what they did still hurts a lot every day). Anyway, this little guy has been by my side constantly during recovery and my heart just overflows with gratitude over this little miracle that keeps me smiling throughout this physical and emotional pain.




Something else to share. He has a lot of friends commenting on his post...one sent him this. Maybe some of you have seen it, it's my first time. Really cute.

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Poor Richard was in so much pain today. This time, not from the two things he's been having problems with, or the procedure he just had. He said, mom, my whole abdomen hurts..bad! Called an Ambulance. We just can't lift him. They were great. We went later. Here are a couple of conversations I posted on our family group..copied so I don't have to write it all again..

First time we were told this...from a CT scan..they thought...

I have an update...while we were in the hospital they came in and said the first CT showed that he had free fluid in his lower abdomen. Also for some reason he has an air bubble up above his liver. They cannot figure out how in the world that an air bubble got in there. He's had blood tests showing that he has high White blood cell count meaning infection of course. They know that one is another UTI. And, probably his wound. Just got a phone call and second CT showed it looked more like an abscess instead of fluid. He is now in surgery having that abscess removed and also going to go ahead and try and remove the Stone surrounding the inside of his bladder. The nurse said that Richard was pretty excited about this Stone being removed. They still have no idea yet why there is an air Bubble Up by his liver. They are still working on figuring that one out. He also has a blocked bowel. They can't tell if it is kinked or not. His lower intestine looks pretty inflamed. At first they were thinking because of the fluid that they were not sure was. Now I'm assuming they are thinking it's because of the abscess.

Surgery is done. They they got the stone and abscess . They still want him to go see the doctor in Salt Lake City. Still needs the bladder augmentation. They cleaned out the abscess. Said that it has probably been there for a while but having the procedure just pushed it over the top and made it painful for him. Said that the air bubble is what they call a distraction. That it is just the size of the tip of a finger. Nothing to worry about.

Thinking that abscess was pretty infected. They will keep him for 2 or 3 days.
 
Wow Cynthia - when it rains it pours!! I am so very sorry he was in so much pain, but glad that they got a few things taken care of while they had him under for the Abscess. My thoughts go out to him, and I hope he has as easy a recovery as possible!!
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Oh, my! I've been away for a few days so I'm just now reading these latest posts! I'm so sorry he's going though all of this. You know, if people thing about Spina Bifida at all, they usually just think, "Oh, can't walk...." But it's so much more than that. It's pain and relief, tears and laughter, struggles and successes, fears and hope. It's the same things we all live day-to-day, but with so many roadblocks added along the way that walking and braces are the least of it.

My love and prayers to you and Richard. I know you'll keep us updated, even if we have to learn a new forum to do it!
 

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