Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Hey Patty, I am so sorry Cassie is feeling bad. Sometimes when Jackie has a cold it causes her worse pain. The docs told us that viral infections can cause pancreatitis. I always worry a cold or something might be viral. I know coughing has to hurt the pancreas, sometimes I think severe coughing caused Jackie's pancreatitis. She had a horrible cough days before she had her first attack. Coughing till she would vomit. We treated it with cough meds but sometimes I blame myself for not doing more. That doc sucks not giving Cassie something for pain. I cannot believe that. I am so sick of the medical profession at this point. I hope Cassie is feeling better and if not I hope you get some pain meds for her. Jackie worries that she won't get any help for pain. It is sad that you have to live in pain and worry if they will give you relief for it. These docs are so into making the kid go to school, it makes me so mad. That is why I started homeschooling, tired of their attitude. She is getting so much more than their tutors could ever give anyway. She only got an hour of school for every day she missed. It was not enough to get what she needed. Hang tough with her doctors and the school board, don't let them push you around. The doc that is doing the ERCP is really good, he did her second one, this one is her third. She did not have an attack with the second one, she did with the first. His name is Dr. Cotton, he even cut a duct open and she did not have an attack, she did have pretty bad pain so they kept her a few days. I just hope they can see what is causing her to be having so many problems right now. Oh about me, well I am really tired. I feel a nervous breakdown coming on. I need to go to work tonite but will have to see how Jack is today. I work third shift. Our hospital has a pull out thing to sleep on, well to say the least my body hurts, LOL. The hospital requires someone to be with children at all times. But it doesn't matter, cuz Jackie will not stay the night up there with anyone but me. She won't even let her dad, he trys but she cries and says she wants mama. I can't tell her no, I stay and he takes our other daughter with him. Of course my other daughter wants me home too. When in ton my husband will take our youngest back to the hotel. They come about 8 am and stay till 9:30pm, none of us will leave each other. It is so cute. Now if I was in the hospital, I don't know about that routine, I think I would want them all to come and go a little, LOL. I hope Cassie is feeling better from her cold and her pancreas pain. Let me know how she is. Talk to ya soon, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 , Do they really require a parent at all times up there. We do have a wonderful peds unit here.They have TV & VCR for each bed. Nintendo and Playstation on mobile carts to take into the rooms, over 250 tapes and games. There is a family room, teen computer rooom, wahser & dryer etc.. They also have a teen activity room, an art room and a preschool play area and activity directors. I believe part of this is paid for by Mc House it's juts down the street and Children's Mirical Network. Most days we are up there Cassie isn't even in here room, it's the night that gets to her. night time seems to be the most common time for IV to go and never early either. Then of course you have the emla that has to be on an hour before they try. You know the routine. I try and stay as much as possible. Every time I sleep with her there I can barely walk for the next few days. She'd take dad but knows how uncomfortalbe he is in hospitals. I e-mealed her GI in Portland today, told him whats been going on with her this week. He left a message and said that we'd discuss this over the phone rather than e-mail because my questions and concerns will require more questions. One of the points I brought up to him was is leaving her with out pain meds humane? After all they were suppose to help her not hurt her. Also told him that she was at the age for drug exposure at school and I didn't want her looking for an illegal and possibly deadly alternative so she could get pain releif. I think I might have struck a nerve. Also, her pcp yesterday requested a urine test for porphobilingen and amino-levulinic acid. Have any idea what this is? The only information I could find on it referred to heavy metal posioning, and the only links to Pancreas I could find were related to pancreatic cancer and damage to islet cells. But you have to be exposed to high doses of cyniad or arsenic. Based on what I could find we feel like he's grasping for straws. Oh by the way this was in response to her blood sugar dropping. I know that all she has to do is eat something and she'll level out i just though they might want to know since we are Talking about her pancreatic functions here. Try to relax, give every one hugs Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 , Do they really require a parent at all times up there. We do have a wonderful peds unit here.They have TV & VCR for each bed. Nintendo and Playstation on mobile carts to take into the rooms, over 250 tapes and games. There is a family room, teen computer rooom, wahser & dryer etc.. They also have a teen activity room, an art room and a preschool play area and activity directors. I believe part of this is paid for by Mc House it's juts down the street and Children's Mirical Network. Most days we are up there Cassie isn't even in here room, it's the night that gets to her. night time seems to be the most common time for IV to go and never early either. Then of course you have the emla that has to be on an hour before they try. You know the routine. I try and stay as much as possible. Every time I sleep with her there I can barely walk for the next few days. She'd take dad but knows how uncomfortalbe he is in hospitals. I e-mealed her GI in Portland today, told him whats been going on with her this week. He left a message and said that we'd discuss this over the phone rather than e-mail because my questions and concerns will require more questions. One of the points I brought up to him was is leaving her with out pain meds humane? After all they were suppose to help her not hurt her. Also told him that she was at the age for drug exposure at school and I didn't want her looking for an illegal and possibly deadly alternative so she could get pain releif. I think I might have struck a nerve. Also, her pcp yesterday requested a urine test for porphobilingen and amino-levulinic acid. Have any idea what this is? The only information I could find on it referred to heavy metal posioning, and the only links to Pancreas I could find were related to pancreatic cancer and damage to islet cells. But you have to be exposed to high doses of cyniad or arsenic. Based on what I could find we feel like he's grasping for straws. Oh by the way this was in response to her blood sugar dropping. I know that all she has to do is eat something and she'll level out i just though they might want to know since we are Talking about her pancreatic functions here. Try to relax, give every one hugs Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 , Do they really require a parent at all times up there. We do have a wonderful peds unit here.They have TV & VCR for each bed. Nintendo and Playstation on mobile carts to take into the rooms, over 250 tapes and games. There is a family room, teen computer rooom, wahser & dryer etc.. They also have a teen activity room, an art room and a preschool play area and activity directors. I believe part of this is paid for by Mc House it's juts down the street and Children's Mirical Network. Most days we are up there Cassie isn't even in here room, it's the night that gets to her. night time seems to be the most common time for IV to go and never early either. Then of course you have the emla that has to be on an hour before they try. You know the routine. I try and stay as much as possible. Every time I sleep with her there I can barely walk for the next few days. She'd take dad but knows how uncomfortalbe he is in hospitals. I e-mealed her GI in Portland today, told him whats been going on with her this week. He left a message and said that we'd discuss this over the phone rather than e-mail because my questions and concerns will require more questions. One of the points I brought up to him was is leaving her with out pain meds humane? After all they were suppose to help her not hurt her. Also told him that she was at the age for drug exposure at school and I didn't want her looking for an illegal and possibly deadly alternative so she could get pain releif. I think I might have struck a nerve. Also, her pcp yesterday requested a urine test for porphobilingen and amino-levulinic acid. Have any idea what this is? The only information I could find on it referred to heavy metal posioning, and the only links to Pancreas I could find were related to pancreatic cancer and damage to islet cells. But you have to be exposed to high doses of cyniad or arsenic. Based on what I could find we feel like he's grasping for straws. Oh by the way this was in response to her blood sugar dropping. I know that all she has to do is eat something and she'll level out i just though they might want to know since we are Talking about her pancreatic functions here. Try to relax, give every one hugs Patty Quote Link to comment Share on other sites More sharing options...
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