Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 I am soo sorry for what your child and you are going through.... ONe thing I thought of is to have someone monitor him in his sleep so that you can sleep. Can you get a script for skilled nursing? Would your insurance pay for it? If not, maybe you could hire someone for a midnight shift and they would awaken you upon any sign of a problem. I can remember the times where I was afraid to go to sleep or the nights where I couldnt sleep as I had to do nursing duty all night. I do have nursing at midnight now during the week but there are nights when I dont. My son is stable but you never know. I use a baby montor. I hope you can figure out an answer and please know that I know what you are going through as I have had similar feelings about Bradley. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 I am soo sorry for what your child and you are going through.... ONe thing I thought of is to have someone monitor him in his sleep so that you can sleep. Can you get a script for skilled nursing? Would your insurance pay for it? If not, maybe you could hire someone for a midnight shift and they would awaken you upon any sign of a problem. I can remember the times where I was afraid to go to sleep or the nights where I couldnt sleep as I had to do nursing duty all night. I do have nursing at midnight now during the week but there are nights when I dont. My son is stable but you never know. I use a baby montor. I hope you can figure out an answer and please know that I know what you are going through as I have had similar feelings about Bradley. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 I am soo sorry for what your child and you are going through.... ONe thing I thought of is to have someone monitor him in his sleep so that you can sleep. Can you get a script for skilled nursing? Would your insurance pay for it? If not, maybe you could hire someone for a midnight shift and they would awaken you upon any sign of a problem. I can remember the times where I was afraid to go to sleep or the nights where I couldnt sleep as I had to do nursing duty all night. I do have nursing at midnight now during the week but there are nights when I dont. My son is stable but you never know. I use a baby montor. I hope you can figure out an answer and please know that I know what you are going through as I have had similar feelings about Bradley. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 How scary for you!!!!! I wish I had answers for you. Instead just sending positive thoughts your way. Kim L > Hey All, > > Thought I'd write you and tell you that I just got home from the hospital > yesterday with Tryny. Last Thursday when we put him to bed after his 11pm > feeding, he started retching and when I plugged his decompression tube in him, > all > that came out was bright red blood. He was bleeding out. We ambulanced him > to > the hospital and over Friday and Saturday, they had to give him 5 blood > transfusions. If he had started retching 20 minutes later, I would never have > heard him and my baby would have bleed out completely and died. This same > thing > happened 5 years ago and he did code in the ER then, but thank God I got him > back. > > It's this darn BLEEDING ULCER he has. So I'm trying to persuade the surgeons > to get it out of him. The problem there is that to do that, they have to > remove at least a third of his stomach and relocate his g-tube site. And they > saw on the scope that Tryny has a very SMALL stomach, so to remove a third > would > be devastating. Not to mention the risk of the surgery and likely hood of > serious infection. They said that they would talk it over, but not sure if > they > want to go that direction as they likely hood of him surviving through the > surgery is not good. But if he bleeds out again and I don't hear him soon > enough he will die anyway and that scares me more. > > I am NOT going to let my baby die. I've kept him alive for 10 years when the > docs all said he would never live to see his first birthday. I've gotten him > through 41 surgeries and over 350 hospitalizations, I won't let a bleeding > ulcer take him from me. > > They have him on medications now but they can't guarantee that the bleeding > will not happen again. I haven't been this scared for Tryny in a long time. > I > can't loose my baby so if there are any suggestions out there, I'm open for > any and all. > > Please keep good thoughts for Tryny, > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 How scary for you!!!!! I wish I had answers for you. Instead just sending positive thoughts your way. Kim L > Hey All, > > Thought I'd write you and tell you that I just got home from the hospital > yesterday with Tryny. Last Thursday when we put him to bed after his 11pm > feeding, he started retching and when I plugged his decompression tube in him, > all > that came out was bright red blood. He was bleeding out. We ambulanced him > to > the hospital and over Friday and Saturday, they had to give him 5 blood > transfusions. If he had started retching 20 minutes later, I would never have > heard him and my baby would have bleed out completely and died. This same > thing > happened 5 years ago and he did code in the ER then, but thank God I got him > back. > > It's this darn BLEEDING ULCER he has. So I'm trying to persuade the surgeons > to get it out of him. The problem there is that to do that, they have to > remove at least a third of his stomach and relocate his g-tube site. And they > saw on the scope that Tryny has a very SMALL stomach, so to remove a third > would > be devastating. Not to mention the risk of the surgery and likely hood of > serious infection. They said that they would talk it over, but not sure if > they > want to go that direction as they likely hood of him surviving through the > surgery is not good. But if he bleeds out again and I don't hear him soon > enough he will die anyway and that scares me more. > > I am NOT going to let my baby die. I've kept him alive for 10 years when the > docs all said he would never live to see his first birthday. I've gotten him > through 41 surgeries and over 350 hospitalizations, I won't let a bleeding > ulcer take him from me. > > They have him on medications now but they can't guarantee that the bleeding > will not happen again. I haven't been this scared for Tryny in a long time. > I > can't loose my baby so if there are any suggestions out there, I'm open for > any and all. > > Please keep good thoughts for Tryny, > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 How scary for you!!!!! I wish I had answers for you. Instead just sending positive thoughts your way. Kim L > Hey All, > > Thought I'd write you and tell you that I just got home from the hospital > yesterday with Tryny. Last Thursday when we put him to bed after his 11pm > feeding, he started retching and when I plugged his decompression tube in him, > all > that came out was bright red blood. He was bleeding out. We ambulanced him > to > the hospital and over Friday and Saturday, they had to give him 5 blood > transfusions. If he had started retching 20 minutes later, I would never have > heard him and my baby would have bleed out completely and died. This same > thing > happened 5 years ago and he did code in the ER then, but thank God I got him > back. > > It's this darn BLEEDING ULCER he has. So I'm trying to persuade the surgeons > to get it out of him. The problem there is that to do that, they have to > remove at least a third of his stomach and relocate his g-tube site. And they > saw on the scope that Tryny has a very SMALL stomach, so to remove a third > would > be devastating. Not to mention the risk of the surgery and likely hood of > serious infection. They said that they would talk it over, but not sure if > they > want to go that direction as they likely hood of him surviving through the > surgery is not good. But if he bleeds out again and I don't hear him soon > enough he will die anyway and that scares me more. > > I am NOT going to let my baby die. I've kept him alive for 10 years when the > docs all said he would never live to see his first birthday. I've gotten him > through 41 surgeries and over 350 hospitalizations, I won't let a bleeding > ulcer take him from me. > > They have him on medications now but they can't guarantee that the bleeding > will not happen again. I haven't been this scared for Tryny in a long time. > I > can't loose my baby so if there are any suggestions out there, I'm open for > any and all. > > Please keep good thoughts for Tryny, > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Wow that is sooo scarry, You and Tryny are in my thoughts. I hope for the best for Tryny Hugs Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Wow that is sooo scarry, You and Tryny are in my thoughts. I hope for the best for Tryny Hugs Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 you are in our thoughts and prayers hugs to you all! maria Hey lady > Hey All, > > Thought I'd write you and tell you that I just got home from the hospital > yesterday with Tryny. Last Thursday when we put him to bed after his 11pm > feeding, he started retching and when I plugged his decompression tube in him, all > that came out was bright red blood. He was bleeding out. We ambulanced him to > the hospital and over Friday and Saturday, they had to give him 5 blood > transfusions. If he had started retching 20 minutes later, I would never have > heard him and my baby would have bleed out completely and died. This same thing > happened 5 years ago and he did code in the ER then, but thank God I got him > back. > > It's this darn BLEEDING ULCER he has. So I'm trying to persuade the surgeons > to get it out of him. The problem there is that to do that, they have to > remove at least a third of his stomach and relocate his g-tube site. And they > saw on the scope that Tryny has a very SMALL stomach, so to remove a third would > be devastating. Not to mention the risk of the surgery and likely hood of > serious infection. They said that they would talk it over, but not sure if they > want to go that direction as they likely hood of him surviving through the > surgery is not good. But if he bleeds out again and I don't hear him soon > enough he will die anyway and that scares me more. > > I am NOT going to let my baby die. I've kept him alive for 10 years when the > docs all said he would never live to see his first birthday. I've gotten him > through 41 surgeries and over 350 hospitalizations, I won't let a bleeding > ulcer take him from me. > > They have him on medications now but they can't guarantee that the bleeding > will not happen again. I haven't been this scared for Tryny in a long time. I > can't loose my baby so if there are any suggestions out there, I'm open for > any and all. > > Please keep good thoughts for Tryny, > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Debra, Many prayers coming your way. Lynn Hey lady Hey All, Thought I'd write you and tell you that I just got home from the hospital yesterday with Tryny. Last Thursday when we put him to bed after his 11pm feeding, he started retching and when I plugged his decompression tube in him, all that came out was bright red blood. He was bleeding out. We ambulanced him to the hospital and over Friday and Saturday, they had to give him 5 blood transfusions. If he had started retching 20 minutes later, I would never have heard him and my baby would have bleed out completely and died. This same thing happened 5 years ago and he did code in the ER then, but thank God I got him back. It's this darn BLEEDING ULCER he has. So I'm trying to persuade the surgeons to get it out of him. The problem there is that to do that, they have to remove at least a third of his stomach and relocate his g-tube site. And they saw on the scope that Tryny has a very SMALL stomach, so to remove a third would be devastating. Not to mention the risk of the surgery and likely hood of serious infection. They said that they would talk it over, but not sure if they want to go that direction as they likely hood of him surviving through the surgery is not good. But if he bleeds out again and I don't hear him soon enough he will die anyway and that scares me more. I am NOT going to let my baby die. I've kept him alive for 10 years when the docs all said he would never live to see his first birthday. I've gotten him through 41 surgeries and over 350 hospitalizations, I won't let a bleeding ulcer take him from me. They have him on medications now but they can't guarantee that the bleeding will not happen again. I haven't been this scared for Tryny in a long time. I can't loose my baby so if there are any suggestions out there, I'm open for any and all. Please keep good thoughts for Tryny, Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Debra, Many prayers coming your way. Lynn Hey lady Hey All, Thought I'd write you and tell you that I just got home from the hospital yesterday with Tryny. Last Thursday when we put him to bed after his 11pm feeding, he started retching and when I plugged his decompression tube in him, all that came out was bright red blood. He was bleeding out. We ambulanced him to the hospital and over Friday and Saturday, they had to give him 5 blood transfusions. If he had started retching 20 minutes later, I would never have heard him and my baby would have bleed out completely and died. This same thing happened 5 years ago and he did code in the ER then, but thank God I got him back. It's this darn BLEEDING ULCER he has. So I'm trying to persuade the surgeons to get it out of him. The problem there is that to do that, they have to remove at least a third of his stomach and relocate his g-tube site. And they saw on the scope that Tryny has a very SMALL stomach, so to remove a third would be devastating. Not to mention the risk of the surgery and likely hood of serious infection. They said that they would talk it over, but not sure if they want to go that direction as they likely hood of him surviving through the surgery is not good. But if he bleeds out again and I don't hear him soon enough he will die anyway and that scares me more. I am NOT going to let my baby die. I've kept him alive for 10 years when the docs all said he would never live to see his first birthday. I've gotten him through 41 surgeries and over 350 hospitalizations, I won't let a bleeding ulcer take him from me. They have him on medications now but they can't guarantee that the bleeding will not happen again. I haven't been this scared for Tryny in a long time. I can't loose my baby so if there are any suggestions out there, I'm open for any and all. Please keep good thoughts for Tryny, Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Debra, Many prayers coming your way. Lynn Hey lady Hey All, Thought I'd write you and tell you that I just got home from the hospital yesterday with Tryny. Last Thursday when we put him to bed after his 11pm feeding, he started retching and when I plugged his decompression tube in him, all that came out was bright red blood. He was bleeding out. We ambulanced him to the hospital and over Friday and Saturday, they had to give him 5 blood transfusions. If he had started retching 20 minutes later, I would never have heard him and my baby would have bleed out completely and died. This same thing happened 5 years ago and he did code in the ER then, but thank God I got him back. It's this darn BLEEDING ULCER he has. So I'm trying to persuade the surgeons to get it out of him. The problem there is that to do that, they have to remove at least a third of his stomach and relocate his g-tube site. And they saw on the scope that Tryny has a very SMALL stomach, so to remove a third would be devastating. Not to mention the risk of the surgery and likely hood of serious infection. They said that they would talk it over, but not sure if they want to go that direction as they likely hood of him surviving through the surgery is not good. But if he bleeds out again and I don't hear him soon enough he will die anyway and that scares me more. I am NOT going to let my baby die. I've kept him alive for 10 years when the docs all said he would never live to see his first birthday. I've gotten him through 41 surgeries and over 350 hospitalizations, I won't let a bleeding ulcer take him from me. They have him on medications now but they can't guarantee that the bleeding will not happen again. I haven't been this scared for Tryny in a long time. I can't loose my baby so if there are any suggestions out there, I'm open for any and all. Please keep good thoughts for Tryny, Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Debra- Just a thought -- do you have a baby monitor in Tryny's room? That would help you hear him sooner. We used a video monitor when Aubrie was little so we could hear and then look to see if the noise required our attention. It was so wonderful. If we'd actually had to go in at every sound, no one would have gotten any sleep and she would never have developed normal sleep patterns. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Debra, The only words I have for you is that I will keep you and Tryny in my prayers. How I feel for you. Please keep us updated. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Debra, The only words I have for you is that I will keep you and Tryny in my prayers. How I feel for you. Please keep us updated. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Debra, The only words I have for you is that I will keep you and Tryny in my prayers. How I feel for you. Please keep us updated. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Thank you to everyone for sending such warm wishes. I appreciate it so much. I'm still trying to figure out another way to eliminate all risks of that ulcer bleeding again without removing it (with Tryny's stomach being so small, even removing a third of it will make it really hard to get his nourishment into him). And the severe risks of that surgery is as scary as the ulcer bleeding again. Thank you again, knowing Tryny has good people like you all out there means so much. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 In a message dated 7/2/2004 6:30:08 PM Pacific Daylight Time, momonamission@... writes: > baby monitor in Tryny's room? Actually Tryny's bed is right next to ours (Tryny has severe apnea at night, his monitor goes off sometimes 10 times a night) and the only way to get him breathing again is for me to stimulate him (Tryny being deaf he doesn't hear the alarm). So for me to get even the 4 hours sleep I get a night, he will always stay where he is. But when he retches, he makes NO noise at all. Thanks for the suggestion though, all suggestions are very welcome. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 In a message dated 7/2/2004 6:30:08 PM Pacific Daylight Time, momonamission@... writes: > baby monitor in Tryny's room? Actually Tryny's bed is right next to ours (Tryny has severe apnea at night, his monitor goes off sometimes 10 times a night) and the only way to get him breathing again is for me to stimulate him (Tryny being deaf he doesn't hear the alarm). So for me to get even the 4 hours sleep I get a night, he will always stay where he is. But when he retches, he makes NO noise at all. Thanks for the suggestion though, all suggestions are very welcome. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Hey, does anyone have Dr. email address. I have it in my other computer but it crashed so I have to use Tryny's computer. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 georgelw@... > Hey, does anyone have Dr. email address. I have it in my > other computer but it crashed so I have to use Tryny's computer. > > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 georgelw@... > Hey, does anyone have Dr. email address. I have it in my > other computer but it crashed so I have to use Tryny's computer. > > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 georgelw@... > Hey, does anyone have Dr. email address. I have it in my > other computer but it crashed so I have to use Tryny's computer. > > Debra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Debra - Is there wetness from the retching? If so, perhaps a bedwetting alarm could be placed where it would detect it. Hugs and prayers, Debbie From the keyboard of DW33333333@...: > Actually Tryny's bed is right next to ours (Tryny has severe apnea at night, > his monitor goes off sometimes 10 times a night) and the only way to get him > breathing again is for me to stimulate him (Tryny being deaf he doesn't hear > the alarm). So for me to get even the 4 hours sleep I get a night, he will > always stay where he is. But when he retches, he makes NO noise at all. > > Thanks for the suggestion though, all suggestions are very welcome. -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Debra - Is there wetness from the retching? If so, perhaps a bedwetting alarm could be placed where it would detect it. Hugs and prayers, Debbie From the keyboard of DW33333333@...: > Actually Tryny's bed is right next to ours (Tryny has severe apnea at night, > his monitor goes off sometimes 10 times a night) and the only way to get him > breathing again is for me to stimulate him (Tryny being deaf he doesn't hear > the alarm). So for me to get even the 4 hours sleep I get a night, he will > always stay where he is. But when he retches, he makes NO noise at all. > > Thanks for the suggestion though, all suggestions are very welcome. -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.