StarChilde
06-01-2004, 10:30 PM
Perhaps here I can find some help. My son, Bren (born in Aug. 1980)has severe cp, also seizure disorders, & "they" say profound severe MR, although I do argue about the validity of that, seeing as they could never issue a standard test...ANYHOW.. starting this last Nov. 2003, he started having swallowing problems. Then it was pressure sores, one on his coccyx, & also on both feet. He stopped assisting with standing, and walking. He could do both with assistance before, was walking with a walker up to 500+ was his best ever.
In Jan. 2004 he was put in the hospital with a coma, lasted 9 hrs. THey found him severely dehydrated and potassium imbalance, plus an idiopathic infection. I could not understand the dehydration & the dr. said that apparently the infection made him run a low grade fever, & he lost fluids like that. Prior to this, he had NEVER been hospitalized. Due to a reason the dr.'s cannot determine, he has lost use of his right arm ENTIRELY. Because of this, he can no longer get off a chair or couch, crawl (he bunny hopped), sit, lie down, turn over...etc. Basically it was he now had to wait to be moved...:(
He has been hospitalized twice since then... has been determined that he has been aspirating his food at times, and had pneumonia, which at some point will involve going to court over a feeding tube. He is at home with us now, and presently he will sleep 75% of the day, 75% of the time.Other days he will be awake ALL night, most the day, and do this for a few days... I have severe arthritis of my lower spine & am over 150 lbs. overweight... it is getting harder and harder to take care of him with all of the care that he needs now.
I guess my question is... his dr. said that Bren has started "the beginning of the end", and I have talked to some other ppl, and they say his actions all are typical of one who is either elderly & ready to pass away, or one with cancer, who is ready to pass away.
I try to get him out, but activity just wears him out, & for the past 2 days, he doesn't seem so interested in eating, and this morning was getting mad at me as I fed him. He had a good night's sleep, and today he will not even wake up when I try to wake him up. His blood work is all coming back ok... has anyone been through anything similar who can pass along their experiences? I have always took care of him, & this is very very hard on me. I want him to be around forever, but not if he is going to be suffering... :(
In Jan. 2004 he was put in the hospital with a coma, lasted 9 hrs. THey found him severely dehydrated and potassium imbalance, plus an idiopathic infection. I could not understand the dehydration & the dr. said that apparently the infection made him run a low grade fever, & he lost fluids like that. Prior to this, he had NEVER been hospitalized. Due to a reason the dr.'s cannot determine, he has lost use of his right arm ENTIRELY. Because of this, he can no longer get off a chair or couch, crawl (he bunny hopped), sit, lie down, turn over...etc. Basically it was he now had to wait to be moved...:(
He has been hospitalized twice since then... has been determined that he has been aspirating his food at times, and had pneumonia, which at some point will involve going to court over a feeding tube. He is at home with us now, and presently he will sleep 75% of the day, 75% of the time.Other days he will be awake ALL night, most the day, and do this for a few days... I have severe arthritis of my lower spine & am over 150 lbs. overweight... it is getting harder and harder to take care of him with all of the care that he needs now.
I guess my question is... his dr. said that Bren has started "the beginning of the end", and I have talked to some other ppl, and they say his actions all are typical of one who is either elderly & ready to pass away, or one with cancer, who is ready to pass away.
I try to get him out, but activity just wears him out, & for the past 2 days, he doesn't seem so interested in eating, and this morning was getting mad at me as I fed him. He had a good night's sleep, and today he will not even wake up when I try to wake him up. His blood work is all coming back ok... has anyone been through anything similar who can pass along their experiences? I have always took care of him, & this is very very hard on me. I want him to be around forever, but not if he is going to be suffering... :(
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gillian
06-01-2004, 11:16 PM
My heart goes out to you you are both in my thoughts and prayers I will ask all the people I know if they have any info.
I would definatly get a second opinion and call all the top kid hospitals and express your concerns.
I would definatly get a second opinion and call all the top kid hospitals and express your concerns.
PajamaMomma
06-02-2004, 10:53 AM
I'm am so sorry to hear about your son! As a mother of a child w/ CP myself, I have always worried about that kind of thing happening. May I ask why the courts would be involved over a feeding tube? If he's not wanting to eat then I would think that a feeding tube (either NJ or G ) would be of some help. At least that way you would know he's getting the nutrition he needs. My son, 8 yrs, had a NJ as an infant and a g tube since 1 yr old due to feeding problems. For us it has been a great help. I can't imagine the upset you are going through right now, my heart goes out to you and your son! Both of you will be in my prayers. GOD BLESS!
BabyLuv
06-02-2004, 11:53 AM
That sure is a tough situation, sending an :angel: your way. I believe you can get some respite care for him (which you are in desperate need of) such as home health care. You can find them in the yellow pages under social service orginazations. Good luck, hugs to you.
musicmaker650
06-13-2004, 12:40 PM
You all must understand that Bren is suffering from serious complications NOT related to his CP at all! While it is true that people with CP often have other non-related troubles, there are many of us that have been blessed with very stable CP, and fairly "easy" lives... Notice that I didn't use the word "mild" here. Make Bren as comfortable as you can, and don't abandon him. Think of what a blessing he is and has been to you and your lives... Let him "go" when it is his time :angel: