Purple and Black
Taking Independent and Unofficial Back

Been a rough couple of weeks...

Benni, tell them to play music around him to see if that helps regulate the storming. My heart tells me that it's got to be the solution.
Leslie has tried the music with him when he's neural storming, but it doesn't work. Thank you for the suggestion though. She plays him some of his favorite songs, as well as some gospel music the two of them shared them together.
 
This was my sister's update as of yesterday:
~Update for Timmy~
They have moved Timmy back to ICU... he was having too many neuro storming episodes for the Transitional Care Unit... They are doing more blood tests and cultures to make certain there are no infections causing him to have fevers... they are taking out the dialysis port, in case of infection there... they can replace it later this week... He was neuro storming when I got to the ICU room this evening and was still doing this when I had to leave him... my heart is just breaking for him, just watching him while he's dealing with these neuro storms... just praying he gets some comfort and sleep tonight... praying the nurses and doctors are guided with their care for him... thank you, everyone for the continued prayers for Timothy Adam
 
A few of you follow me on FB, so you know what has been going on. Others, maybe not so much. My nephew was found June 26th, unconscious and barely breathing. He has been ICU since that time, on a vent, dialysis, feeding tube. The doctors have diagnosed him with anoxic brain damage and have told my sister there is no medical recovery for this. I've found out since that time that it was due to an accidental pain pill overdose. His girlfriend said he took, what he thought, were loose Tylenol pills that were in the glove box of her car for a headache. They were actually codeine. She said that they had "messed with him" and that he still had a headache and took more on top of it, not realizing how many he had already taken. They've taken him off the vent as of yesterday, and his eyes are open, but he's focusing on nothing. My sister said that the doctors have told her there is no brain function at all.

She called me last week to talk and informed me that one of our cousins sons was found around the same time as my nephew, in the same condition (barely breathing and unconscious) but they had found him in time and he's already home. And then told me another cousin had died last Sunday, his funeral was Friday. I stayed with this cousin, my aunt, and uncle, for a while after my mom had died when I was little, so always felt close to this part of my family.

My sister is really struggling dealing with the situation with Timmy. She had lost her 6 yo grandson in November, when he drowned. That's only been 7 months ago, and now she is dealing with a new kind of grief on top of it. The doctors have told Leslie that if Timmy were their son, they would let him go, because he won't come back from this. When my sister had called, she made sure I had a chance to talk with Timmy (my Timmony Cricket), tell him I love him, and say good bye. She is ready to let him go, but his father isn't able to. His father was the one that was with their grandson when he drowned, so he has blamed himself, and I think if he agrees to turn off all life support, he'll blame himself for this too. So their goal right now is to get Timmy to a health condition in which he can be moved to a long term care facility for a couple of months, to give him every opportunity to regain some function, but that if he doesn't regain any functioning, they'll decide at that time what further steps to take or not take.

I've been waiting, ever since June 26th, for my sister to call me and tell me that Timmy has died, waiting to make that drive to Missouri for a funeral that I hope never has to come. It's been a rough time for my sister especially, and I'm being supportive for her, being here for her, listening when she needs to talk, and praying for a miracle, but have been grieving as well.

Add work to this and increased job responsibilities and stress on top of that ... I'll get through it. I always do. But right now is rough.
jesus benni, I'm so sorry to hear this. I've only seen this post now, I'm sorry for your loss
 
Benni really needs our Prayers and thoughts more than ever right now. More has happened to a different family member (close).
I'll let Benni share if she wants too, but hugs are going out to her!
Thank you, Gem.
 
It's been a wild July. Well, it started June 26th with my nephew, and July ended the 29th with my oldest son being seriously injured in a bicycle wreck.

I love my son, I do, but he has always been into the extreme sports (skateboarding, BMX, roller blades - doing stunts with all of them). He decided, that even though he is now 35 years old, that he could still do stunts on a BMX. He landed wrong and has numerous fractures in his face. He texted me Thursday from the ER, said he was hurt, but he thought he was going to be okay. I wanted to head to Missouri that night, but he talked me out of it, and said by the time I got there, he'd probably be home. So I waited Friday for him to message me, to let me know he was okay and at home, but wasn't hearing from him. I called the hospital in his town and they said he wasn't there, but didn't tell me anything else. His father's long term girlfriend informed me on FB that the hospital had transferred him to St. Louis (Barnes Jewish Hospital). I drove to St. Louis, got there about 1:30 in the morning and spent another 2 hours trying to find a hotel room. I couldn't find one. After 7 hotels, I gave up and asked at the last one if they would mind if I slept in my vehicle in their parking lot. I slept about 2 hours there and then headed to the hospital.

My brilliant son basically broke his face. The doctors said there were too many fractures to count. He broke his orbital socket, has a hair line fracture in his forehead, broke both his right and left sinuses and the little bone thingy that separates them, has numerous fractures in his cheek. With the fractures in his sinuses there is a risk of him leaking cerebrospinal fluid and he has to be watched closely for the 1st 7 days and then monitored for the 2nd week, don't have to keep as close of an eye on him. He is also getting air to his brain, which I didn't fully understand. But from what I understood, they were concerned that the air could build pressure? I was more worried about him leaking cerebrospinal fluid that I just didn't fully follow what the doctor was saying about getting air to the brain. But they did tell him to watch out for any major head aches. He also has to report any double vision, as that means his eye has sunken into his orbital socket and will need surgery to put it back into place and to hold it there. I could only stay until today but he has friends that said they would stay with him the rest of this week.

227309852_1901309976697792_4221574847398742974_n.jpg
I don't know if you can see, but the right side of his face is really swollen in this picture. The swelling had come down some by this morning. And yes, mom got him the balloon bouquet but the bear had a bandage on his face too., so I couldn't resist. He went through al of this on Tylenol only. The hospital wouldn't give him any pain medication. I was so pissed about that. But when it first happened, Josh said that his pain was only at a 4 or 5, but his face was swollen and numb. He was really hurting the night he was released home from the hospital but they said that since he'd gotten by on Tylenol, they didn't want to give him something else with them not knowing how he would react to it.

I think he's going to be okay. He's planning to return to work tomorrow, against mom's wishes, but on light duty only. He lives paycheck to paycheck and says he can't afford to miss any more work. I did get him set up with insurance and since he doesn't earn a lot, the hospital will pay off his entire bill through a program they have.

He has to follow up with a plastic surgeon and see if there are any structural repairs they will need to make, especially in the sinus and cheek area, but also possibly his orbital socket. They wanted to wait until the swelling was completely gone.

I also went to see my sister and my nephew while I was in St. Louis. Josh was at Barnes and my nephew is at Mercy. My sister is holding on to hope, but he's not there. It was heartbreaking to watch, because he has had almost constant neural storming for the past week and a half and he's been posturing (his entire body tenses up), his hands are starting to constrict and he already looks like he is getting foot drop. Leslie said she thinks that he follows her if she moves slowly, but his eyes randomly move and he's not focusing on anything. The posturing looks painful to me. I took my sister out to eat and had a heart to heart with her. I told her that she needs to make some tough decisions but that I will be there for her. She was going to talk with the doctor today to see what their recommendation is. It's too late, she said, to tell them to just stop the vent or dialysis, because he's not on either of those any more. He has a feeding tube and a trach with oxygen. I told her she should consider hospice when she is ready though. I knew it was bad, but didn't realize just how bad until I saw Timmony Cricket. It's heart breaking.
 
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This is the time when I should not be doing research. Research is bad, bad benni, bad bad bad. I wanted to find out about the air getting to his brain. Now I'm wishing I could have stayed the full 2 weeks to monitor him myself. Air to the brain is not good. I should have been paying closer attention.
 
It's been a wild July. Well, it started June 26th with my nephew, and July ended the 29th with my oldest son being seriously injured in a bicycle wreck.

I love my son, I do, but he has always been into the extreme sports (skateboarding, BMX, roller blades - doing stunts with all of them). He decided, that even though he is now 35 years old, that he could still do stunts on a BMX. He landed wrong and has numerous fractures in his face. He texted me Thursday from the ER, said he was hurt, but he thought he was going to be okay. I wanted to head to Missouri that night, but he talked me out of it, and said by the time I got there, he'd probably be home. So I waited Friday for him to message me, to let me know he was okay and at home, but wasn't hearing from him. I called the hospital in his town and they said he wasn't there, but didn't tell me anything else. His father's long term girlfriend informed me on FB that the hospital had transferred him to St. Louis (Barnes Jewish Hospital). I drove to St. Louis, got there about 1:30 in the morning and spent another 2 hours trying to find a hotel room. I couldn't find one. After 7 hotels, I gave up and asked at the last one if they would mind if I slept in my vehicle in their parking lot. I slept about 2 hours there and then headed to the hospital.

My brilliant son basically broke his face. The doctors said there were too many fractures to count. He broke his orbital socket, has a hair line fracture in his forehead, broke both his right and left sinuses and the little bone thingy that separates them, has numerous fractures in his cheek. With the fractures in his sinuses there is a risk of him leaking cerebrospinal fluid and he has to be watched closely for the 1st 7 days and then monitored for the 2nd week, don't have to keep as close of an eye on him. He is also getting air to his brain, which I didn't fully understand. But from what I understood, they were concerned that the air could build pressure? I was more worried about him leaking cerebrospinal fluid that I just didn't fully follow what the doctor was saying about getting air to the brain. But they did tell him to watch out for any major head aches. He also has to report any double vision, as that means his eye has sunken into his orbital socket and will need surgery to put it back into place and to hold it there. I could only stay until today but he has friends that said they would stay with him the rest of this week.

View attachment 916
I don't know if you can see, but the right side of his face is really swollen in this picture. The swelling had come down some by this morning. And yes, mom got him the balloon bouquet but the bear had a bandage on his face too., so I couldn't resist. He went through al of this on Tylenol only. The hospital wouldn't give him any pain medication. I was so pissed about that. But when it first happened, Josh said that his pain was only at a 4 or 5, but his face was swollen and numb. He was really hurting the night he was released home from the hospital but they said that since he'd gotten by on Tylenol, they didn't want to give him something else with them not knowing how he would react to it.

I think he's going to be okay. He's planning to return to work tomorrow, against mom's wishes, but on light duty only. He lives paycheck to paycheck and says he can't afford to miss any more work. I did get him set up with insurance and since he doesn't earn a lot, the hospital will pay off his entire bill through a program they have.

He has to follow up with a plastic surgeon and see if there are any structural repairs they will need to make, especially in the sinus and cheek area, but also possibly his orbital socket. They wanted to wait until the swelling was completely gone.

I also went to see my sister and my nephew while I was in St. Louis. Josh was at Barnes and my nephew is at Mercy. My sister is holding on to hope, but he's not there. It was heartbreaking to watch, because he has had almost constant neural storming for the past week and a half and he's been posturing (his entire body tenses up), his hands are starting to constrict and he already looks like he is getting foot drop. Leslie said she thinks that he follows her if she moves slowly, but his eyes randomly move and he's not focusing on anything. The posturing looks painful to me. I took my sister out to eat and had a heart to heart with her. I told her that she needs to make some tough decisions but that I will be there for her. She was going to talk with the doctor today to see what their recommendation is. It's too late, she said, to tell them to just stop the vent or dialysis, because he's not on either of those any more. He has a feeding tube and a trach with oxygen. I told her she should consider hospice when she is ready though. I knew it was bad, but didn't realize just how bad until I saw Timmony Cricket. It's heart breaking.
Crikey Benni, I don't even know what to say. Hopefully your son will get away without needing any structural repair doing, that'd be one less thing to worry about. The situation with your nephew is just heart-breaking, I can't even begin to imagine making some of the choices your family needs to make. Big hugs, we're all here for you. 💜
 
It's been a wild July. Well, it started June 26th with my nephew, and July ended the 29th with my oldest son being seriously injured in a bicycle wreck.

I love my son, I do, but he has always been into the extreme sports (skateboarding, BMX, roller blades - doing stunts with all of them). He decided, that even though he is now 35 years old, that he could still do stunts on a BMX. He landed wrong and has numerous fractures in his face. He texted me Thursday from the ER, said he was hurt, but he thought he was going to be okay. I wanted to head to Missouri that night, but he talked me out of it, and said by the time I got there, he'd probably be home. So I waited Friday for him to message me, to let me know he was okay and at home, but wasn't hearing from him. I called the hospital in his town and they said he wasn't there, but didn't tell me anything else. His father's long term girlfriend informed me on FB that the hospital had transferred him to St. Louis (Barnes Jewish Hospital). I drove to St. Louis, got there about 1:30 in the morning and spent another 2 hours trying to find a hotel room. I couldn't find one. After 7 hotels, I gave up and asked at the last one if they would mind if I slept in my vehicle in their parking lot. I slept about 2 hours there and then headed to the hospital.

My brilliant son basically broke his face. The doctors said there were too many fractures to count. He broke his orbital socket, has a hair line fracture in his forehead, broke both his right and left sinuses and the little bone thingy that separates them, has numerous fractures in his cheek. With the fractures in his sinuses there is a risk of him leaking cerebrospinal fluid and he has to be watched closely for the 1st 7 days and then monitored for the 2nd week, don't have to keep as close of an eye on him. He is also getting air to his brain, which I didn't fully understand. But from what I understood, they were concerned that the air could build pressure? I was more worried about him leaking cerebrospinal fluid that I just didn't fully follow what the doctor was saying about getting air to the brain. But they did tell him to watch out for any major head aches. He also has to report any double vision, as that means his eye has sunken into his orbital socket and will need surgery to put it back into place and to hold it there. I could only stay until today but he has friends that said they would stay with him the rest of this week.

View attachment 916
I don't know if you can see, but the right side of his face is really swollen in this picture. The swelling had come down some by this morning. And yes, mom got him the balloon bouquet but the bear had a bandage on his face too., so I couldn't resist. He went through al of this on Tylenol only. The hospital wouldn't give him any pain medication. I was so pissed about that. But when it first happened, Josh said that his pain was only at a 4 or 5, but his face was swollen and numb. He was really hurting the night he was released home from the hospital but they said that since he'd gotten by on Tylenol, they didn't want to give him something else with them not knowing how he would react to it.

I think he's going to be okay. He's planning to return to work tomorrow, against mom's wishes, but on light duty only. He lives paycheck to paycheck and says he can't afford to miss any more work. I did get him set up with insurance and since he doesn't earn a lot, the hospital will pay off his entire bill through a program they have.

He has to follow up with a plastic surgeon and see if there are any structural repairs they will need to make, especially in the sinus and cheek area, but also possibly his orbital socket. They wanted to wait until the swelling was completely gone.

I also went to see my sister and my nephew while I was in St. Louis. Josh was at Barnes and my nephew is at Mercy. My sister is holding on to hope, but he's not there. It was heartbreaking to watch, because he has had almost constant neural storming for the past week and a half and he's been posturing (his entire body tenses up), his hands are starting to constrict and he already looks like he is getting foot drop. Leslie said she thinks that he follows her if she moves slowly, but his eyes randomly move and he's not focusing on anything. The posturing looks painful to me. I took my sister out to eat and had a heart to heart with her. I told her that she needs to make some tough decisions but that I will be there for her. She was going to talk with the doctor today to see what their recommendation is. It's too late, she said, to tell them to just stop the vent or dialysis, because he's not on either of those any more. He has a feeding tube and a trach with oxygen. I told her she should consider hospice when she is ready though. I knew it was bad, but didn't realize just how bad until I saw Timmony Cricket. It's heart breaking.
Well, this is just terrible. :disbelief: Hoping your son heals fast and surgery won't be necessary. Good thing Mom's to the rescue getting his insurance straightened out - and that bear balloon is really cool!

Ironic that you were also able to visit your sister and Tim on the same fateful trip. My heart is breaking for her, there's nothing worse for a mother to go through.
 
Crikey Benni, I don't even know what to say. Hopefully your son will get away without needing any structural repair doing, that'd be one less thing to worry about. The situation with your nephew is just heart-breaking, I can't even begin to imagine making some of the choices your family needs to make. Big hugs, we're all here for you. 💜

I'm hoping he won't need surgery either. After doing a bit of research, usually if anything is going to happen, it does so in the first 72 hours, so I was able to stay with him during the most critical period, but there are some that have delayed responses to the air getting to the brain and leaking cerebrospinal fluid. The air getting to the brain could be more serious than I realized. I don't know, you start mentioning what Josh calls "the brain juice" leaking I would think that would be the worst of the worst, but with his kind of fractures, that's more like a symptom from the air building up in the brain cavity. If we can get through the next 2 weeks without any incidents, I'll be a much more relieved and relaxed mom, but the way things are going in my family right now, it has me worried.

And thank you maple.
 
Well, this is just terrible. :disbelief: Hoping your son heals fast and surgery won't be necessary. Good thing Mom's to the rescue getting his insurance straightened out - and that bear balloon is really cool!

Ironic that you were also able to visit your sister and Tim on the same fateful trip. My heart is breaking for her, there's nothing worse for a mother to go through.

He's supposed to see the plastic surgeon in 2 weeks, but his insurance won't kick in until September 1st. That will put it at more like a month but they won't take him without the insurance. Hoping that if repairs are needed they won't have to rebreak anything.

I got lucky that Gordon (a friend of Josh's) said he would stay with him so I could go visit her and Timmy. (I really like his friend Gordon, he's 21, just married a 42 year old woman, and showed up the first night we got to Josh's with a home cooked meal for both of us.) I had to take another trip to St. Louis, but I was determined to see her and Timmy. I knew she at the very least needed a hug. She cried on my shoulder when I first hugged her, like she would do when she was little and hurting. I did everything I could to protect her when we were little, because I was determined she would NEVER go through what I experienced. Dad would leave us for a week or two at a time after our mom died, Leslie was 4 months old, and I would take care of her. If I scared in the middle of the night (which I often did because of nightmares) I would bundle her up, grab some diapers, her bottle, and go to a neighbor's house and they'd let me sleep there. I'd be gone with Leslie in the morning before they got up. They'd bring us left overs, which really saved us sometimes, because dad had been gone so long and we'd be running short of food. I'd stop eating just to make sure she ate. I'd eat whatever was left on her high chair tray or what she threw on the floor. Josh's dad, Eddie, pointed out one time that when we started getting short on food towards the end of the month, I'd still do that, years later, stop eating so Josh and he could eat. I'm saying that because I have always tried to protect her and I can't protect her from this. I would if I could. I would take all of that away from her and gladly be willing to take Timmy's place on that bed, but I can't protect her in this. And it is so frustrating to me. And I can't get the vision of Timmy, how he is right now, out of my head. I had a dream that night that I saw him that Josh was in that position and woke up terrified that he was and had to check on him to make sure he was sleeping okay. I just watched Josh that night sleep after that.

I'm sorry, it's been a rough week. Barnes is right next to the neighborhood where I lived as a little girl. Adam's School (where I went to head start, kindergarten, and first grade) is still standing. The house I lived in was torn down, a part of me is grateful for that and another part of me thinks I needed to see to put to rest some ghosts. My aunt's old apartment where I almost got my foot cut off, is still standing and it looks just the same. So there were a lot of older emotions that came up this trip too.

On top of it, all the driving I've done has caused my leg and feet to swell (from all the old clots) and I didn't stop the way I should have to get out and walk around and keep the blood circulating because I just had to get there, and usually it goes down after a good night's sleep but I'm still swollen today and hurting some.

Ignore my brain today, it's all over the place.
 
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Josh just got to work and is going home. He's running a low grade temp right now. That was something else we needed to keep an eye on. I should have stayed, shouldn't have come home.
 
Josh just got to work and is going home. He's running a low grade temp right now. That was something else we needed to keep an eye on. I should have stayed, shouldn't have come home.
Trust your gut and try to heal yourself. You need deep self-care to reduce that swelling, and process the old abuse trauma (you were such a brave and caring sister). You'll go back to Josh if you need to. Gordon sounds like a gem too.

My mother died 20 years ago today on my watch (cancer). I've had some setbacks in the last month too. Nothing like yours, but still very saddening. Lost 2 older extended family members and had to put my kitty Iris down after 15 years, along with general future uncertainties. I promised myself I would go to the Lake Park today and sit under the trees and watch the water for the first time this summer. All the bureaucratic stuff can wait a day or 2.
 
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Trust your gut and try to heal yourself. You need deep self-care to reduce that swelling, and process the old abuse trauma (you were such a brave and caring sister). You'll go back to Josh if you need to. Gordon sounds like a gem too.

My mother died 20 years ago today on my watch (cancer). I've had some setbacks in the last month too. Nothing like yours, but still very saddening. Lost 2 older extended family members and had to put my kitty Iris down after 15 years, along with general future uncertainties. I promised myself I would go to the Lake Park today and sit under the trees and watch the water for the first time this summer. All the bureaucratic stuff can wait a day or 2.

I'm so sorry about your losses! Losing a mom, at any time, is so hard. And losing a beloved kitty is losing another family member. I'm sorry for your losses in your family. This month has been hard on a lot of people. And I'm moping around about my own family issues. I'm so so sorry poppy. If you need to talk today, just send me a message. I'm here. I do have to get Cara registered for her senior year today, but otherwise I will be around. I'm taking today off and may go sit in a bubble bath, relax, rest, and read to get my mind in a better space.

Sitting and watching the water sounds lovely. Please take care of yourself too!
 
I'm so sorry about your losses! Losing a mom, at any time, is so hard. And losing a beloved kitty is losing another family member. I'm sorry for your losses in your family. This month has been hard on a lot of people. And I'm moping around about my own family issues. I'm so so sorry poppy. If you need to talk today, just send me a message. I'm here. I do have to get Cara registered for her senior year today, but otherwise I will be around. I'm taking today off and may go sit in a bubble bath, relax, rest, and read to get my mind in a better space.

Sitting and watching the water sounds lovely. Please take care of yourself too!
I'm doing better. Have to let it out eventually. Had a long talk about everything Sunday with my friend Mike (since we were 9), and his wonderful husband in Arizona - one of the deaths was Mike's mom. They are more like my family than what's left of my family and we talked for quite a while. Mike actually had a mild heart attack week before last, but he is doing well and the damage was minimal.
I'll send you some calming water vibes.:hug:
 
I'm doing better. Have to let it out eventually. Had a long talk about everything Sunday with my friend Mike (since we were 9), and his wonderful husband in Arizona - one of the deaths was Mike's mom. They are more like my family than what's left of my family and we talked for quite a while. Mike actually had a mild heart attack week before last, but he is doing well and the damage was minimal.
I'll send you some calming water vibes.:hug:
I'm glad the damage was minimal, but how scary! I keep thinking that we're all getting to that age. I see clients that are my age and are considered "elderly". Umm, nope. AARP may decide I'm old, but I haven't reached that conclusion just yet. But it must be great to have a friend that you can talk with about anything. All of my friends are in Missouri and we just do not keep in close contact any more. The one friend I did talk with about everything is in Cali and he and I are really not talking any longer. (He turned out to support Trump and was involved in QAnon. YIKES!) So, I guess this was my venting spot. lol
 
I'm glad the damage was minimal, but how scary! I keep thinking that we're all getting to that age. I see clients that are my age and are considered "elderly". Umm, nope. AARP may decide I'm old, but I haven't reached that conclusion just yet. But it must be great to have a friend that you can talk with about anything. All of my friends are in Missouri and we just do not keep in close contact any more. The one friend I did talk with about everything is in Cali and he and I are really not talking any longer. (He turned out to support Trump and was involved in QAnon. YIKES!) So, I guess this was my venting spot. lol
Oh no, I could not deal with that either. To be honest, Mike and I have had our rough patches too when we didn't talk much, or at all. We came back around this time when his Mom died.
 
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Trust your gut and try to heal yourself. You need deep self-care to reduce that swelling, and process the old abuse trauma (you were such a brave and caring sister). You'll go back to Josh if you need to. Gordon sounds like a gem too.

My mother died 20 years ago today on my watch (cancer). I've had some setbacks in the last month too. Nothing like yours, but still very saddening. Lost 2 older extended family members and had to put my kitty Iris down after 15 years, along with general future uncertainties. I promised myself I would go to the Lake Park today and sit under the trees and watch the water for the first time this summer. All the bureaucratic stuff can wait a day or 2.
Oh Poppy's I'm so sorry.
 
Benni, I'm glad you at least got to see your nephew when you were there. I was hoping you'd get the chance too.
Hoping your son starts mending fast.
Does your sister have accommodations in St. Louis?
Is there anything we can do to help?
 

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