Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Well this morning i am off to meet my students and observe my class. wish me luck.... I am very worried about ms, hailee and i dont know what to do so i am turning to you guys that maybe i can get some advice. We have been home since saturday.. Hailee isnt eating or drinking she has no interest in her foods, not even m&m's which are her all time favorites, she is throwing up her feeds i can only get a little bit into her at a time, like 2 oz a day of formula. All she wants to do is lay around, she still has no energy, she wont even talk. (this is a child who when well is very active and very very vocal) shes doing a lot of sleeping and a lot of seizures. I feel like she is rapidly deteriorating but no one is listening to me. We no longer have a line and i am scared to death. Her o2 has been running 92 while up, which is unusuall for her she is 99 when up. We saw neuro and gi yesterday, both where like she's awake she looks good. I tried explaining that this is not hailee, which neuro knows and neither one listened. Gi is planning on doing an eeg to see how bad her reflux is as to whether or not she needs a fundul, the fundul scares me because with her sod diagnosis the only way to know she is sick and crashing is her throwing up, if she has the fundul she wont be able to. I am feeling frustrated. I know that she just got out of the hopspital from being very septic but she never still acts like this once home. I want my child back. These disorders are scaring me and i dont know what to do. to add to it my x husband and i got into it, because i asked him to consider taking our son full time next school year due to hailee being so sick, i am constantly worrying over who is picking him up from school and taking care of him while we are in the hospital, dad really dosnt help. he went off on me and said i was doing it so i could have a social life... sorry to vent _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 , Don't get me started on x husbands...I could go on for hours. Becasue they are not dealing with our sick kids around the clock, they don't get it! (most anyways-I'm sure there are some good ones). Next, why won't they hook her up to an IV with d10 and see if she is more responsive. First of all she is probably really dehydrated and her sugars are probably low. Mito kids cannot go without food and fluid. Who do you see for the mito? I think you should call them and see if they can get it through to your ped and gi doc. I hope your first day goes well,let us know! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Dawn, we dont yet see anyone for hailee's mito, its still only suspected Im just feeling frustrated, she is now covered with a rash, and still just wants to lay on the floor and do nothing. Meet my students today, they are great. Mel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Darla, thanks, Hailee allready has a g tube we had it put in 3 years ago and our surgeon didnt want to do the fundal, when we allready had reflux at the time. so now we just wait.. We have a peds appointment tomorrow, she is awake, she just dosnt seem to want/or able to do any thing.. Mel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 I dont think she has 5th, its not on her face, nor did it start there, but we do see the dr tomorrow so i will let you know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 I can't believe the doctor's aren't taking it seriously. Any time a child who normally is talkative and active becomes lethargic and doesn't talk, even following a hospital stay, it should be a concern. Do they indicate why they aren't concerned or are they just acting as if they don't really see a problem? Doctors can be so frustrating at times! Keep an eye on her and seek help if it continues. As far as the fundo, I am pretty new at it but know from Zipporrah that you will still be able to tell if she feels like throwing up even if she can't do it. Zipporrah has dry heaves and tummy lurching when feeling ill/too full. Her phlegm issue is our big problem causing her tummy lurching. If you go with the fundo, will you get a g-tube as well? It would be nice to have one for hydration and for times she is refusing to eat. If she isn't eating, the docs need to know that and do something for her! Write a journal of what she does and when as well as what she eats and what you have tried to get her to eat. I have found if the docs can read a thorough journal they will actually HEAR us. Also as a note, if your daughter did get a g-tube and needs to vomit, you can get some out through the burp tube. We have found it quite helpful to rid tons of phlegm or an over-full tummy. I know sometimes I get scared about the future too. If I think " too much " I start to worry. Both Asenath and Zipporrah seem to be having the beginning of a virus again and have fevers, lower pulse-ox's, faster breathing, and are extra crabby. When this begins to happen I start worrying about what could happen and then need to get my brain under control and think more positively and try to deal with each moment as it comes rather than tackle the whole day or month, year, future worries. Too much to worry about and dwell on. It just emotionally wears us out, and then we are worse off than before we start worrying. Hope this makes some sense. I havne't had much sleep lately. Please try to take care of yourself and get some well desearved rest. Prayers coming your way for you guys. Hope some of this helps you. I also hope your day of work went well today. Darla: mommy to Asenath, Zipporrah, and the gang > Well this morning i am off to meet my students and observe my class. wish me > luck.... > > I am very worried about ms, hailee and i dont know what to do so i am > turning to you guys that maybe i can get some advice. > > We have been home since saturday.. Hailee isnt eating or drinking she has no > interest in her foods, not even m&m's which are her all time favorites, she > is throwing up her feeds i can only get a little bit into her at a time, > like 2 oz a day of formula. All she wants to do is lay around, she still > has no energy, she wont even talk. (this is a child who when well is very > active and very very vocal) shes doing a lot of sleeping and a lot of > seizures. I feel like she is rapidly deteriorating but no one is listening > to me. We no longer have a line and i am scared to death. Her o2 has been > running 92 while up, which is unusuall for her she is 99 when up. > We saw neuro and gi yesterday, both where like she's awake she looks good. > I tried explaining that this is not hailee, which neuro knows and neither > one listened. Gi is planning on doing an eeg to see how bad her reflux is > as to whether or not she needs a fundul, the fundul scares me because with > her sod diagnosis the only way to know she is sick and crashing is her > throwing up, if she has the fundul she wont be able to. > I am feeling frustrated. I know that she just got out of the hopspital from > being very septic but she never still acts like this once home. I want my > child back. These disorders are scaring me and i dont know what to do. > to add to it my x husband and i got into it, because i asked him to consider > taking our son full time next school year due to hailee being so sick, i am > constantly worrying over who is picking him up from school and taking care > of him while we are in the hospital, dad really dosnt help. he went off on > me and said i was doing it so i could have a social life... > > sorry to vent > > > _________________________________________________________________ > FREE pop-up blocking with the new MSN Toolbar – get it now! > http://toolbar.msn.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Mel, I found this link when you mentioned a rash. Could it be fifths disease? Contrary to the name, it is just a virus. It causes a rash and fatigue and flu like symptoms. It can cause some anemia in some children and can be a little worse in children who are already compromised. Here is an article on it: http://kidshealth.org/parent/infections/bacterial_viral/fifth.html Check it out. There is no real treatment for it, but it might answer some questions for you and make you feel more at ease if this is what she has! Glad you like you class! Dawn Quote Link to comment Share on other sites More sharing options...
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