iluvwv
10-16-2008, 08:45 PM
My husband is back in the hospital. He was fine last night and this morning he was completely out of it. We were in ER from 9 this morning to 5 this evening and then they put him in a room. He kept calling me by my son's name, he doesn't remember how to eat or go to bathroom. He doesn't know how old he is or what year it is. They said his ammonia was 125. When she came in to take his ammonia level I asked her where the ice was. I learned this from you Marcia. She acted like I was stupid and said it did not have to go on ice. So would his ammonia be higher than 125 since they didn't put it on ice? What else can be done to bring the ammonia down? They gave him lactolose but I've been doing that every day, 3 times a day. He still has not gone to bathroom.
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writeleft
10-16-2008, 08:58 PM
Oh, I am so sorry to hear of your husbands condition. I am also a caregiver of a friend in ESLD. It's so important to seek support for yourself at this time, so I'm gald you posted.
I just went through a 9 day hospitalization with my friend, so I understand all your concerns. I found so much help with this from the amazing posters on health boards. I would advise you to continue to educate yourself on this horrible disease (which you obviously are), and let those caregivers at the hospital know you mean business.
Are you his medical power of attorney?
I just went through a 9 day hospitalization with my friend, so I understand all your concerns. I found so much help with this from the amazing posters on health boards. I would advise you to continue to educate yourself on this horrible disease (which you obviously are), and let those caregivers at the hospital know you mean business.
Are you his medical power of attorney?
iluvwv
10-16-2008, 09:53 PM
thanks for the post. yes, i have medical power of attorney.
writeleft
10-16-2008, 10:14 PM
So you are his medical Power of Attorney...That's a tough spot to be in. I am truly sorry for all you are facing. You are obviously a strong and caring person, with a BIG job.
The encephalopathy is devastating. I have just watched ESLD consume a dear friend of mine, a treasure of musical genius, reduced to a very sick and angry redheaded jerk. It is so painful, I understand, and I am truly sorry. Please be strong, we will be watching for your updates!
The encephalopathy is devastating. I have just watched ESLD consume a dear friend of mine, a treasure of musical genius, reduced to a very sick and angry redheaded jerk. It is so painful, I understand, and I am truly sorry. Please be strong, we will be watching for your updates!
feelbad
10-17-2008, 11:14 PM
hon, they DO need to ice this IMMEDIATELY since ammonia will dissapate quickly. if anything his actual ammonia level could have been or could be much HIGHER than it actually showed on that test,just because it was not properly iced immediately upon being drawn. there is some level of breakdown that occurs when the blood is not iced. i cannot remeber the whole thing here but i would definitely ask them to draw one specimen with ice and one without and see if there is any difference. personally,i think there will be.
every single different ER or hospital we went to that they had to draw an emergent or routine ammonia level on my son,ALWAYS iced the tube,always. he used to have a long standing appt at 3:00 right after school every single wed,up til his transplant,and every single tube for the ammonia draw was set into a cup of ice the tech always had sitting there. i would seriously make them do this for him and compare samples. from what you described here i DO think his actual level was much higher than was stated as.
ask them to look up the standard lab procedures/protocals for drawing ammonia levels,i can guarentee you its listed in the standard protocals tho not every hospital actually does this for some stupid reason(too inconvenient perhaps??). if it didn;t make a difference in the levels,it wouldn't be in the standard protocals in the first place,you know what i mean? they just really do need to be doing this for him. talk to his doc about this and see what he says. or ask to see the overall standards that the lab itself has and compare that to national standards. they HAVE to have at least one standard protocal lab book in the lab at that hospital. you just need to make certain they are doing the right things in the right way for your husband. and you were right to question that tech. maybe she actually bothered to look this up after she got back to the lab??? we can only hope? but you DO have right on your side here,trust me on that one. good for you.
when things are not being done properly in any hospital it usually is not til something actually happens to a patient or somebody bothers to question something that things get changed or even found out,ya know? i would ask around that hospital about this practice,it just is NOT the nationally accepted standard in ammonia draw protocal. i do hope your hubby is doing better. they DO need to start doing this the right way from now on. just to make sure you are up to speed on this,look up some info on proper lab procedures for ammonia blood draws. it will help alot to back your point. it will also just give you a much clearer understanding of why this needs to be done this way too. good luck hon,marcia
every single different ER or hospital we went to that they had to draw an emergent or routine ammonia level on my son,ALWAYS iced the tube,always. he used to have a long standing appt at 3:00 right after school every single wed,up til his transplant,and every single tube for the ammonia draw was set into a cup of ice the tech always had sitting there. i would seriously make them do this for him and compare samples. from what you described here i DO think his actual level was much higher than was stated as.
ask them to look up the standard lab procedures/protocals for drawing ammonia levels,i can guarentee you its listed in the standard protocals tho not every hospital actually does this for some stupid reason(too inconvenient perhaps??). if it didn;t make a difference in the levels,it wouldn't be in the standard protocals in the first place,you know what i mean? they just really do need to be doing this for him. talk to his doc about this and see what he says. or ask to see the overall standards that the lab itself has and compare that to national standards. they HAVE to have at least one standard protocal lab book in the lab at that hospital. you just need to make certain they are doing the right things in the right way for your husband. and you were right to question that tech. maybe she actually bothered to look this up after she got back to the lab??? we can only hope? but you DO have right on your side here,trust me on that one. good for you.
when things are not being done properly in any hospital it usually is not til something actually happens to a patient or somebody bothers to question something that things get changed or even found out,ya know? i would ask around that hospital about this practice,it just is NOT the nationally accepted standard in ammonia draw protocal. i do hope your hubby is doing better. they DO need to start doing this the right way from now on. just to make sure you are up to speed on this,look up some info on proper lab procedures for ammonia blood draws. it will help alot to back your point. it will also just give you a much clearer understanding of why this needs to be done this way too. good luck hon,marcia
iluvwv
10-19-2008, 08:43 AM
he is back home. his confusion is much better as the large doses of lactulose are working and they also have him on neomycin which i think is causing his to go too. he is still a little confused but he knows who i am now and able to eat by himself. he just doesn't comprehend what i'm saying half the time. he is jerking pretty bad, his legs and arms. they gave him magnesium thru the IV and I have upped his dosage from 400 mg a day to 800 mg a day, but he is still jerking. thanks for your posts.. just wanted to let you know he is doing better and at home. the transplant clinic called and he is #2 on the transplant list so I hope this will happen soon.