Mg
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Join Date: Jan 2003
Posts: 4,955
Aw Sidney,
I just jump in because I care about you and Jared.
I'm glad he had a good day. The scooter sounds way cool. I hope he has fun with it.
I know you are short on time, but please take good care of yourself.
That is just as important as taking care of Jared.
Big hugs,
Gabe
I just jump in because I care about you and Jared.
I'm glad he had a good day. The scooter sounds way cool. I hope he has fun with it.
I know you are short on time, but please take good care of yourself.
That is just as important as taking care of Jared.
Big hugs,
Gabe
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Thread Starter
Join Date: Oct 2002
Location: new mexico
Posts: 242
couch
Gabe,
I sleep on the couch every night. I am afraid of the sound of the phone ringing. Every time the phone rings, my stomach drops and my heart races.
I have images of Jared dying and how they would tell me. I don't think they would call me and tell me, I think they would wait for me to come see him. They know how I am . I go every day. They wouldnt want me to drive with the knowledge. I am suffering. I am dying along with my child.
Every day I try to find something positive. This is why I work with autistic and mentally ill children. Somehow, I need to find some peace , some kind of balance. I am fooling myself. I am not a negative person. I have three other children, which at this point don't really need me. I am tired of my other children HATING me. Im tired of my daughter calling me a f*****g b***h. Im tired of my 26 year old son telling me I ruined his life. If I did, I dont know what I did. They have no clue how hard I have worked over the years to take care of them. I am not on welfare, I have worked, worked, worked and worked. I have been nothing but kind to them and tried to show them a good work ethic. I have always been there for them to talk to and listen.
I am tired. I want to go. I want to be with my husband.
Thanks for your time.
Sid.
I sleep on the couch every night. I am afraid of the sound of the phone ringing. Every time the phone rings, my stomach drops and my heart races.
I have images of Jared dying and how they would tell me. I don't think they would call me and tell me, I think they would wait for me to come see him. They know how I am . I go every day. They wouldnt want me to drive with the knowledge. I am suffering. I am dying along with my child.
Every day I try to find something positive. This is why I work with autistic and mentally ill children. Somehow, I need to find some peace , some kind of balance. I am fooling myself. I am not a negative person. I have three other children, which at this point don't really need me. I am tired of my other children HATING me. Im tired of my daughter calling me a f*****g b***h. Im tired of my 26 year old son telling me I ruined his life. If I did, I dont know what I did. They have no clue how hard I have worked over the years to take care of them. I am not on welfare, I have worked, worked, worked and worked. I have been nothing but kind to them and tried to show them a good work ethic. I have always been there for them to talk to and listen.
I am tired. I want to go. I want to be with my husband.
Thanks for your time.
Sid.
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Thread Starter
Join Date: Oct 2002
Location: new mexico
Posts: 242
homecoming
MG,
Actually Jared will be home tomorrow (thurs). They pushed it up a day. He is still hallucinating, even today. Today was only one voice but it was one of "the bad ones". The cardiac problem is still there. The only reason he is coming home is because the insurance doesnt want to pay anymore. Im going to see if they will pay for a defibrulator. I might have mentioned that to you before. I dont even know what Ive said from day to day and Im too tired to read my old posts. I dont want to read them anyways. From where we live it would take the paramedics 20 minutes to get here if needed. Tooooooooooo Long.
Hope you are doing well.
As always I thank you.
Blessings,
Sid
Actually Jared will be home tomorrow (thurs). They pushed it up a day. He is still hallucinating, even today. Today was only one voice but it was one of "the bad ones". The cardiac problem is still there. The only reason he is coming home is because the insurance doesnt want to pay anymore. Im going to see if they will pay for a defibrulator. I might have mentioned that to you before. I dont even know what Ive said from day to day and Im too tired to read my old posts. I dont want to read them anyways. From where we live it would take the paramedics 20 minutes to get here if needed. Tooooooooooo Long.
Hope you are doing well.
As always I thank you.
Blessings,
Sid
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Are you talking about an implanted defibrillator or an external defibrillator? You really need one.
I was thinking that you could also put him on a monitor of some kind like they use for babies that are at risk of SIDS. Medi-cal will often turn things down and the doctor can write a TAR (sp?)
I'm sure he'll be glad to be home even if it's for a short time.
Hugs,
MG
I was thinking that you could also put him on a monitor of some kind like they use for babies that are at risk of SIDS. Medi-cal will often turn things down and the doctor can write a TAR (sp?)
I'm sure he'll be glad to be home even if it's for a short time.
Hugs,
MG
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Thread Starter
Join Date: Oct 2002
Location: new mexico
Posts: 242
defibrulator
MG,
Im talkig about an external defibrulator. I know how to use one. I requested a monitor because I was anxious about Jareds QTc during sleep. The pediatric cardioligist didnt think he needed one (DUH). He will be seeing a specialist, one of the best in the country on the 6th of Aug. She is only going to be here in New Mexico for three months and they were at least able to get us scheduled in. The other thing is if I had to call the parimedics it would take them about 20 minutes to get here. That wouldnt be much help.
Have a good day,
Love,
sid
Im talkig about an external defibrulator. I know how to use one. I requested a monitor because I was anxious about Jareds QTc during sleep. The pediatric cardioligist didnt think he needed one (DUH). He will be seeing a specialist, one of the best in the country on the 6th of Aug. She is only going to be here in New Mexico for three months and they were at least able to get us scheduled in. The other thing is if I had to call the parimedics it would take them about 20 minutes to get here. That wouldnt be much help.
Have a good day,
Love,
sid
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Thread Starter
Join Date: Oct 2002
Location: new mexico
Posts: 242
Jared
Jared is home,
He had a good afternoon. He couldnt wait to get home to ride his scooter. It looks like they're may be some delay on the respite service so I can work. My older kids will help out next week. He is still hallucinating and still has the prolonged QTc as of today. Actually his hallucinations have gotten worse this week. I have copies of several of his EKG's and am going to call United Way tomorrow to talk to someone about a defibulater. I figure the worst they can do is say no. He has an appointment tomorrow with his regular Pdoc. He will definatly see the regression as he has known Jared for three years now.
I will have to wait for his August appointment with the specialist to see if she will prescribe a defibulator. One day at a time, is all I can do. It's driving me nuts.
Thank you Gabe for your kind thoughts and words of encouragment.
MG, You Know.
Love,
Sid
He had a good afternoon. He couldnt wait to get home to ride his scooter. It looks like they're may be some delay on the respite service so I can work. My older kids will help out next week. He is still hallucinating and still has the prolonged QTc as of today. Actually his hallucinations have gotten worse this week. I have copies of several of his EKG's and am going to call United Way tomorrow to talk to someone about a defibulater. I figure the worst they can do is say no. He has an appointment tomorrow with his regular Pdoc. He will definatly see the regression as he has known Jared for three years now.
I will have to wait for his August appointment with the specialist to see if she will prescribe a defibulator. One day at a time, is all I can do. It's driving me nuts.
Thank you Gabe for your kind thoughts and words of encouragment.
MG, You Know.
Love,
Sid
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Thread Starter
Join Date: Oct 2002
Location: new mexico
Posts: 242
Meltdown
MG,
Jared had a Major Meltdown today. I am so angry. He should have never left the hospital, he was still psychotic and having the cardiac problems. He was only discharged Thursday. Guess where he is today. I had to call the police. 3 police cars, 1 firetruck and 1 paramedic unit in my front yard. He had to be restrained by the police and then on the gurney. They gave him valiun and then thorazine. I told them, no thorazine because of the long QT.
This trama was avoidable if they had not released him prematurley. Let the ever lovin insurance pay for all that. Idiots. I am numb . I now longer have a clue what to due. He attacted me (which I can deal with) but I had the back up of my two older sons (who just think Jared is a brat). They blame me. Im sick of the both of them.
Venting and in pain.
I hope you are well,
Love,
Sid
Jared had a Major Meltdown today. I am so angry. He should have never left the hospital, he was still psychotic and having the cardiac problems. He was only discharged Thursday. Guess where he is today. I had to call the police. 3 police cars, 1 firetruck and 1 paramedic unit in my front yard. He had to be restrained by the police and then on the gurney. They gave him valiun and then thorazine. I told them, no thorazine because of the long QT.
This trama was avoidable if they had not released him prematurley. Let the ever lovin insurance pay for all that. Idiots. I am numb . I now longer have a clue what to due. He attacted me (which I can deal with) but I had the back up of my two older sons (who just think Jared is a brat). They blame me. Im sick of the both of them.
Venting and in pain.
I hope you are well,
Love,
Sid
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Sidney,
It just doesn't make a lot of sense. I see things like this all the time and I don't understand it either. They waste a lot of money saving money.
I'm sorry you and Jared had to go through the added stress of going back to the hospital in this way. Change must also throw him into his behaviors. It's hard to adjust.
Take care of yourself if you can. Take time for yourself. I know you have a lot going on. There isn't much more you can do. Try not to put so much pressure on yourself to solve all this. You're doing everything you can. There are some things we just can't fix.
Take it a day at a time and make the best decisions for that day.
Many hugs,
MG
It just doesn't make a lot of sense. I see things like this all the time and I don't understand it either. They waste a lot of money saving money.
I'm sorry you and Jared had to go through the added stress of going back to the hospital in this way. Change must also throw him into his behaviors. It's hard to adjust.
Take care of yourself if you can. Take time for yourself. I know you have a lot going on. There isn't much more you can do. Try not to put so much pressure on yourself to solve all this. You're doing everything you can. There are some things we just can't fix.
Take it a day at a time and make the best decisions for that day.
Many hugs,
MG
Member
Join Date: Jan 2003
Posts: 4,955
Sidney,
I'm sorry that you're going through all this. I don't understand why the hospital released him either. Seems like hospitals aren't about making people well anymore.
As MG said, try to take care of yourself.
I know what you're going through is very painful and difficult.
Hugs,
Gabe
I'm sorry that you're going through all this. I don't understand why the hospital released him either. Seems like hospitals aren't about making people well anymore.
As MG said, try to take care of yourself.
I know what you're going through is very painful and difficult.
Hugs,
Gabe
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Thread Starter
Join Date: Oct 2002
Location: new mexico
Posts: 242
Appeal
Thanks MG and Gabe,
The insurance called yesterday and there is going to be an appeal. The hospital administer (who happens to be Jareds outpatient doc) is totally discusted with the insurance and has told them so in no uncertain terms. I have to go before a panel and plead my case. What case?? Anyway I will have some high powered backing so he thinks the insurance will pay. Otherwise, I will have a tremendous medical bill that everyone knows no one could pay. I guess most parents doent bother with the appeals because its not their money. I want the hospital to be paid. Since his new addmission the insurance is "pending". If this was a child with just a medical issue this would not be happening. I guess the side effect of possible sudden death isnt enough for them since it also encludes a mental illness.
Oh well,
Thanks for your support,
Sid
The insurance called yesterday and there is going to be an appeal. The hospital administer (who happens to be Jareds outpatient doc) is totally discusted with the insurance and has told them so in no uncertain terms. I have to go before a panel and plead my case. What case?? Anyway I will have some high powered backing so he thinks the insurance will pay. Otherwise, I will have a tremendous medical bill that everyone knows no one could pay. I guess most parents doent bother with the appeals because its not their money. I want the hospital to be paid. Since his new addmission the insurance is "pending". If this was a child with just a medical issue this would not be happening. I guess the side effect of possible sudden death isnt enough for them since it also encludes a mental illness.
Oh well,
Thanks for your support,
Sid
Member
Join Date: Feb 2002
Location: Charleston S.C.
Posts: 1,461
Hi Sidney, I just wanted you to know that your in my prayers. You and Jared. I have been so busy at work. During the summer there is alot of extra surgery. Being a childrens hospital, parents try and have elective surgery done in the summer. This way, the kids don't miss school. Also, you through in the Democrat Convention, and it is a mess. I would like to suggest that you find some time for yourself. Even if it is just for an hour. When I get to the point that I keep running, I go to a local AA Meditation Meeting. They turn the lights down, light some candles and people just relax. Let me tell you, if someone isn't sure they are racing. Try sitting and do, NOTHING, for 1 hour. I found it hard at first. Another way I find peace is I donate platlets every couple of weeks. I'm not sure you can donate blood or platlets but, I use it to help people and myself. For 2 1/2 hours I'm hooked to the machine and can't go anyplace or answer phone, etc. Like I said the meditation meeting also works, because it is dark and I can't escape without drawing attention. Really though, I'm worried about you. You won't be there for Jared, if you don't take care of yourself. God Bless, Don W
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Join Date: Oct 2002
Location: new mexico
Posts: 242
Don,
Thank you so much. You know, I looked at a schedule of the AA meetings here and was totally overwhelmed. I couldnt figure out what kind they were or what would be appropriate for me. I've never been to one and Lord knows I need to start. Any suggestions? They all seem to have some kind of acronym after them. I just dont understand.
I really like your idea of giving blood. That one should be easier to figure out.
Jared will be moved to an Residential Treatment Cottage because of the insurance. His regular doctor will keep tabs on him. In the acute cottage the doctor checks the children every day. In an RTC cottage the doctor only checks them once a week. The RTC's are for children who have already been stabelized. Obviously Jared hasnt, but at least he will be right there on the same hospital grounds, just in a lower level cottage .
I put a call into his social worker at his school (when he was home) she knows him very well and has first hand experience with the violence at school. I am hoping she will go to this appeal thing with me but at the very least write a letter explaining his behavior at school. I'm tired of the BIG EYE always being on me, like its my fault. I'm tired of it feeling like its my fault.
I can see why you would be busier during the summer. I always tried to schedule things for my kids when they would be out of school (wisdom teeth removal, tonsils, things like that). Never worked with my daughter though because she always had some kind of heath problem and still does. I dont know whats with her but her body is not up to par.
We had a somewhat flood here last night. Had to wait an hour just to drive down my road. It was actually kind of fun to have a diversion that I could see and put my finger on. Sounds crazy, I know. But then consider the source.
Blessings and Love to you and your family. Do you have kids of your own? I dont remember you mentioning any, just your wife. I hope she also is doing well.
Sidney
Thank you so much. You know, I looked at a schedule of the AA meetings here and was totally overwhelmed. I couldnt figure out what kind they were or what would be appropriate for me. I've never been to one and Lord knows I need to start. Any suggestions? They all seem to have some kind of acronym after them. I just dont understand.
I really like your idea of giving blood. That one should be easier to figure out.
Jared will be moved to an Residential Treatment Cottage because of the insurance. His regular doctor will keep tabs on him. In the acute cottage the doctor checks the children every day. In an RTC cottage the doctor only checks them once a week. The RTC's are for children who have already been stabelized. Obviously Jared hasnt, but at least he will be right there on the same hospital grounds, just in a lower level cottage .
I put a call into his social worker at his school (when he was home) she knows him very well and has first hand experience with the violence at school. I am hoping she will go to this appeal thing with me but at the very least write a letter explaining his behavior at school. I'm tired of the BIG EYE always being on me, like its my fault. I'm tired of it feeling like its my fault.
I can see why you would be busier during the summer. I always tried to schedule things for my kids when they would be out of school (wisdom teeth removal, tonsils, things like that). Never worked with my daughter though because she always had some kind of heath problem and still does. I dont know whats with her but her body is not up to par.
We had a somewhat flood here last night. Had to wait an hour just to drive down my road. It was actually kind of fun to have a diversion that I could see and put my finger on. Sounds crazy, I know. But then consider the source.
Blessings and Love to you and your family. Do you have kids of your own? I dont remember you mentioning any, just your wife. I hope she also is doing well.
Sidney
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Join Date: Oct 2002
Location: new mexico
Posts: 242
Gabe,
Thanks for being there and listening to all my crap (can we say that)? Anyways I hope all is well with you and your family and I appreciate your caring. It carries alot of weight, when you feel so overwhelmed, to have someone take the time to respond and empathize.
Blessings,
Sid
Thanks for being there and listening to all my crap (can we say that)? Anyways I hope all is well with you and your family and I appreciate your caring. It carries alot of weight, when you feel so overwhelmed, to have someone take the time to respond and empathize.
Blessings,
Sid
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Thread Starter
Join Date: Oct 2002
Location: new mexico
Posts: 242
writing
MG,
Good advice. I will get everything in writing. They already have all the documentation on Jared. Im not sure what else they want. But I will get their side in writing and if I need to I will get an advocate to help me.
Thanks,
Sid
Good advice. I will get everything in writing. They already have all the documentation on Jared. Im not sure what else they want. But I will get their side in writing and if I need to I will get an advocate to help me.
Thanks,
Sid
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