8 replies to this topic

[Theresar360]

I thought things were going so good then we got knocked back 10 million feet. Victoria ended back in the hospital. She was not waking up and spasming horribly. Her oxygen level was really low. She had been running a fever. She went into AD numerous times. Come to find out she had a UTI, her vent is not set correctly she has been trying to breathe on her own more than they thought. They do not know why she is jerking severly as she is on meds. They are going to keep her for a couple of days and get all of this worked out. She still has had no therapy still waiting for them. She has used up all of her insurance from her dad's job $1,000,000.00 since December, 2007 so she is now on state aid. I guess that is the problem how terrible her dad at 26 yrs old and mom 25 yrs old both have work and worked at professional careers to end up like this. Something is not right her is the USA when a young couple have a SCI baby just turned 2 accident happened when she was 18 mths and this is how it all ends up. Grandma Theresa

[cate]

Hi Theresa, So sorry to hear that things are not too good for Victoria. Thoughts are with you and hope things soon get a lot better
Cate

[C Herod]

Theresar360, on Jul 7 2008, 03:34 AM, said:

I thought things were going so good then we got knocked back 10 million feet. Victoria ended back in the hospital. She was not waking up and spasming horribly. Her oxygen level was really low. She had been running a fever. She went into AD numerous times. Come to find out she had a UTI, her vent is not set correctly she has been trying to breathe on her own more than they thought. They do not know why she is jerking severly as she is on meds. They are going to keep her for a couple of days and get all of this worked out. She still has had no therapy still waiting for them. She has used up all of her insurance from her dad's job $1,000,000.00 since December, 2007 so she is now on state aid. I guess that is the problem how terrible her dad at 26 yrs old and mom 25 yrs old both have work and worked at professional careers to end up like this. Something is not right her is the USA when a young couple have a SCI baby just turned 2 accident happened when she was 18 mths and this is how it all ends up. Grandma Theresa

I am so sorry for what you and your family are going through. My husband has severe spasms and i can't imagine what it would be like for such a small lil' girl. I have a daughter the same age and my heart goes out to you. I will pray for you guys. It is so tough waiting for the state. We had no insurance for my husband and we waited months for therapy, and still ended up with therapy. I reccomend bothering the crap out of anyone you can talk to. There were so many times i kept waiting only to find out that someone somewhere had dropped the ball. Keep calling and calling. Ask people who are going thru this crap. There were so many things we didn't know about that even our case workers at places didn't tell us about. We could have been getting help in different ways from the begining. You guys should have a benefit for her. You might be surprised how much money can be raised. We had a benefit for my husband, and it was crazy how many people we didn't even know showed up. It's a great thing to see. I hope i'm not being nosey, but i was curious what kinda of accident she had. Bless her heart. My husbands was a car accident. His fault.

[PaulaMommy]

Hi theresa
I'm so sorry to hear about Victoria's troubles. How is she doing now? Bryson got discharged. They've been home around 2 weeks. So far, so good...just having problems with the nurses not showing and I dont think Kimla trusts them yet, which is understandable. She spent 6 months in the hospital by his side learning how to care for him.
ANyway, I think of you guys often...and continue to pray for you.

[New Dimension]

cate, on Jul 7 2008, 08:50 AM, said:

Hi Theresa, So sorry to hear that things are not too good for Victoria. Thoughts are with you and hope things soon get a lot better
Cate

Cate,
Being the mother of a 20 yr old son 7 months post injury I am looking for words of wisdom.
How do you manage? How old is your daughter? How are her spirits? How are yours? Are you the sole caretaker? Do you invision her independence?
Looking for words of wisdom>..........

[cate]

Hi New Diamensions.
My daughter is one of the" lucky ones" She is totally independant, she is able to walk with crutches and is able to work, part time, lives on her own, and also drives, but had to have tests first of all. She is c5/6 and has Browns Sequard Syndrome also Lymppdema. she manages well, She has pain and tiredness but copes real well, has a very s She was not dx fopr a number of years, until things got really bad, they were thinking along the lines of MS. until they dd=trong determination, we just hope she will not get any worse, but there are no guarantees in this life.
Even with her abilitiy to get around, there are still down days, she has also had 4 ops on one of her knees, which was a different accident and is now having trouble with the other knee. The right side of body, moves very much slower, than the left, and her hands curl one more than the other. She was not dx for many years, they were going along with idea of MS, until they decided to do a scan and found crush spinal cord and c5/6 from a car accident about 8 years previously. Once discovered they op immedately, has the metal work in her neck and bone taken from the hip. seems to have worked out ok, sadly no regeneration the spinal cord, was crushed to long a time. Did not know until afterwards if she would be in a wheelchair, fortunately she is not, She is now 40 years, this all started about 15 years ago. So during time of various ops I have moved in with her to help, but she sacks me as soon as she can, and has said no more ops enough is enough
Sorry no words of wisdom, you will find your own way through and 7 months is early days How is your son coping with the accident? n Anything I can help you with please ask

[Theresar360]

PaulaMommy, on Aug 5 2008, 08:05 PM, said:

Hi theresa
I'm so sorry to hear about Victoria's troubles. How is she doing now? Bryson got discharged. They've been home around 2 weeks. So far, so good...just having problems with the nurses not showing and I dont think Kimla trusts them yet, which is understandable. She spent 6 months in the hospital by his side learning how to care for him.
ANyway, I think of you guys often...and continue to pray for you.

Good to hear Bryson is finally home! How is he doing? How is his recovery doing? Is he still on a ventilator and has he recovered any use of his legs and arms? Sorry for all the questions but I have really been wondering how you all were.
Victoria is doing better again. She is not getting the help that we all think she needs. What is so frustrating is that her dad works long and hard. He works for the operators union. He is a heavy equiptment operator. When the accident happened they had really good insurance. The bad thing is that there is a life time maximum that Victoria exceeded within the first four months. This has meant that they have had to turn to the state for her medical care. Her supplies alone are $4,000 a month. This also means that she does not get anywhere near the therapy or anything else she needs. For goodness sakes she is still waiting for her wheelchair. The one she has is a loner and is really bad. She gets therapy only once a week. What in the world is that going to do. She still is on the vent, can.t talk, and is not any better than when she left the hospital. It is so frustrating I could just scream! Oh well I guess I should quite complaining and count my blessings. God let us keep our baby for awhile longer. I have to go for now please let me know how things are going. Love you all, Theresa

[PaulaMommy]

Hi Theresa
I havent talked to Kimla in a week or so , but last text message said they were doing great. Bryson is 100% on the vent, no use of arms and legs. The last MRI (or CT?) showed no spinal cord from C1 down to C6 or so. It was a very sad day for everyone...the nurses cried, Kimla cried. At that point, Kimla just tried to focus on getting him home and making his life as happy as possible for as long as possible. Last i heard, they were short nursing staff so Kimla was having to be his full-time caregiver for a few days. Ugh-I pray for her and her young daughter and how all this affects them....and of course little Bryson. I will try to go see them during this upcoming football season when we will be traveling up there (they live 3 hours northwest of here now).
I'm so sorry about the insurance and lack of therapy. I dont know how much Bryson gets. He is also on State Medicaid and it was a NIGHTMARE to get his equipment and get him discharged. They approved an old/bad vent (not the one he was on and doing great on). It took like 2 days? on the bad vent and they said he "failed" the trial-run...which of course, is what we hoped for so he could get the good one. I'll ask Kimla for an update...and send her this link.
Keeping you in my prayers...

[Theresar360]

PaulaMommy, on Aug 17 2008, 06:59 PM, said:

Hi Theresa
I havent talked to Kimla in a week or so , but last text message said they were doing great. Bryson is 100% on the vent, no use of arms and legs. The last MRI (or CT?) showed no spinal cord from C1 down to C6 or so. It was a very sad day for everyone...the nurses cried, Kimla cried. At that point, Kimla just tried to focus on getting him home and making his life as happy as possible for as long as possible. Last i heard, they were short nursing staff so Kimla was having to be his full-time caregiver for a few days. Ugh-I pray for her and her young daughter and how all this affects them....and of course little Bryson. I will try to go see them during this upcoming football season when we will be traveling up there (they live 3 hours northwest of here now).
I'm so sorry about the insurance and lack of therapy. I dont know how much Bryson gets. He is also on State Medicaid and it was a NIGHTMARE to get his equipment and get him discharged. They approved an old/bad vent (not the one he was on and doing great on). It took like 2 days? on the bad vent and they said he "failed" the trial-run...which of course, is what we hoped for so he could get the good one. I'll ask Kimla for an update...and send her this link.
Keeping you in my prayers...

Paula, I am sorry to hear about the extent of Bryson's injury. Victoria's is from C-4 thru C-7 and she is a complete also. My daughter is on her own completely she has no nursing help at all. When she went complete state pay all the nurse's quit. There pay went from 75.00 an hour to 25.00 an hour. Nice huh? Let me know how things are going. Theresa