Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 We have suggested to Luke that it would be helpful for him to talk with a pastor or someone outside the family to help deal with the emotional pain of Asenath's illness. He loves her so much and it just rips him apart knowing she is battling for her life. He doesn't think it would help but I think we need to pursue it. We just came home after spending all day in ER for him and Isaac (9) trying to get help for this stupid coughing issue without success. No answers again. Other than a borderline high white blood count, nothing was seen to treat. They have symptoms very similar to Whooping cough and have had a possible exposure to it but we aren't getting any answers. A pulmonology appointment has been set up for this Wednesday but am unsure how that will help. This virus began over a month ago in Luke and just won't go away and is so scary when they hack away and then can't stop and can't catch their breath. Asthma treatments don't seem to help and cough syrup neither. Now it is spreading to several of the other kids and I am fearful for Asenath and Zipporrah. I got some test results this morning for Porrah that I will comment on in another e-mail. I just don't know how they could handle this bad of a virus. Darla: mommy to Asenath, Zipporrah, and the gang Re: /all anesthesia & sick kids Darla,Oh my, what a plate full of stress you have. So many areas of critical concern....., regarding Luke and your other children and their concern for Porrah also having Mito. Red & Ada both found it very helpful to speak with "someone" else. I took them to a Grief Support Center. I went with Ada because of her young age,and Red attended a group with other young boys. I feel that we have a very good relationship with our children. That they feel safe with us, and that we all have a very open relationship, yet the benefit they both received from speaking with others -- was very noticeable. Most hospitals have some sort of family support center available through their hospice program. Some have specialized services and/or groups focusing on supporting all memebers of a family that has a medically fragile child. Maybe you could link up with something through the hospital in Des Moines (isn't that your closet large city?)Does Des Moines have a Children's Hospital? They seem to offer the most extensive services, including groups by age, individual sessions for sibs & parents, and sometimes week end camps. At least here, all services are free of charge, as they are supported by the hospital foundations.It is a stress on the entire family. My thoughts & prayers continue to be with all of you. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 We have suggested to Luke that it would be helpful for him to talk with a pastor or someone outside the family to help deal with the emotional pain of Asenath's illness. He loves her so much and it just rips him apart knowing she is battling for her life. He doesn't think it would help but I think we need to pursue it. We just came home after spending all day in ER for him and Isaac (9) trying to get help for this stupid coughing issue without success. No answers again. Other than a borderline high white blood count, nothing was seen to treat. They have symptoms very similar to Whooping cough and have had a possible exposure to it but we aren't getting any answers. A pulmonology appointment has been set up for this Wednesday but am unsure how that will help. This virus began over a month ago in Luke and just won't go away and is so scary when they hack away and then can't stop and can't catch their breath. Asthma treatments don't seem to help and cough syrup neither. Now it is spreading to several of the other kids and I am fearful for Asenath and Zipporrah. I got some test results this morning for Porrah that I will comment on in another e-mail. I just don't know how they could handle this bad of a virus. Darla: mommy to Asenath, Zipporrah, and the gang Re: /all anesthesia & sick kids Darla,Oh my, what a plate full of stress you have. So many areas of critical concern....., regarding Luke and your other children and their concern for Porrah also having Mito. Red & Ada both found it very helpful to speak with "someone" else. I took them to a Grief Support Center. I went with Ada because of her young age,and Red attended a group with other young boys. I feel that we have a very good relationship with our children. That they feel safe with us, and that we all have a very open relationship, yet the benefit they both received from speaking with others -- was very noticeable. Most hospitals have some sort of family support center available through their hospice program. Some have specialized services and/or groups focusing on supporting all memebers of a family that has a medically fragile child. Maybe you could link up with something through the hospital in Des Moines (isn't that your closet large city?)Does Des Moines have a Children's Hospital? They seem to offer the most extensive services, including groups by age, individual sessions for sibs & parents, and sometimes week end camps. At least here, all services are free of charge, as they are supported by the hospital foundations.It is a stress on the entire family. My thoughts & prayers continue to be with all of you. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 Darla, I printed all of your emails and thought I would respond to all three in this one. Luke- Yes pursue, when you have time, giving him the opportuity to speak with some one outside of the family. It make take more than one visit for him to feel comfortable enough with that person to really open up. I'm so sorry that they are still ill with the lingering unknown virus. How frustrating and scary to have that lingering in your home. Ada, also had a difficult time kicking it. I supplemented her with mega Vit C & Fish Oil & Zinc Lozenges. and lots of Rest, rest, rest. As far as Asenath & Porrah catching it, oh my, let's hope......, watch carefully. IV's really helped pull Lily back from the brink of the illness/seizure cycle a few times. How is Zipporrah doing with the nursing/eating? did you get any advice/help from whiteman when you spoke with him? I'm sorry Dr whiteman reported back to you with the news that he did. Thankful that the MRI etc was normal. Lily had high lactic acid. I remember reading an E Medicine article on Lactic acidosis and pretty much panicking!That was near the beginning of the journey, we become " use to " so many things that one shouldn't. Anyways, Lily's levels were quite high off and on, more high than low. We never did have it " treated " per se. Hopefully Whiteman will take a more pro- active course with her, since he is the expert. My thoughts are with you and yours, Quote Link to comment Share on other sites More sharing options...
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