Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 This ER visit was another frustrating one as the doctor takes one look and thinks she is ok. Doesn't check O2 levels, doesn't give meds for the 103.2 degree temperature, no IV fluids, no hospitalization, and miscommunicates to Dr. Whiteman about several issues She has double ear infections, high temp., low urine output, less nursing, coughing and vomiting with lots of phlegm (right in from of the doc) and she says she doesn't think treatment is necessary. Only after seeing pneumonia did she offer antibiotics. I got a little rough and she gave me one that covered the gambit rather than a small antibiotic. Darla, This is appalling!!! Especially for an infant! Every tme I take Chelsea into the ER for anything, they ALWAYS check her O2, temp, and her vitals, always do a chest xray(because of her history), and always prepare her for being admitted. Just in case. I am so sorry that Zipporah is sicker, I surely hope things look up soon! Please keep us updated on her and Asenath. e, CHelsea's mom (nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Sorry I am unaware of anything you are seeking advise on. Just wanted to let you know that we are thinking of her. I'm amazed they were willing to go as far as putting a NG tube in, but did not think she needed to be hospitalized, some doctors amaze me. My healthy children have been admitted with less than that. Sorry to hear of your troubles, and we will pray for a quick recovery. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 I know it is hard for many of you because your mito MD's are not close and you have no choice, but to go to an ER close to home. I feel so bad for you all when you talk about local hospitals not listening. I don't know if this helps or not, but here is my 2 cents. *When you child is ill at home call your mito MD and let them know what is going on. We do this to give them a heads up that they may be having to send orders to the ER at somepoint. * When you are heading off to the ER call again or have them paged ~tell them the hospital you are going to and maybe they will call in or fax labs. *Maybe if your mito MD has a letter drawn up about your child and how mito affects them and what to do during illness that could help (we could only wish for them to listen). We have had letters in the past that say even if the child is not dehydrated or not as sick as the ER md's think that they still need to follow the letter. *And lastly in a perfect world ER's would listen. I just ran into this last week when because of a snow storm we decided to go to an ER closer to home and they didn't get it. I told our mito nurse what we went through and that by the time you get your sick child to the hosp and then get beat up for the staff and questioned "Have you been told her really has mito or are they just testing her?", that you are so worn out that the ER staff make you start to even question yourself and start believeing they might be right. Darla: Did they check her for RSV? Brenna had RSV & Pneumonia at almost 2 yrs old ~ even though she was not a preemie, over the age of one year and had RSV in the past. I am sure things are crazy at your house, but if you get a chance maybe you should page or call Dr. Whiteman and tell him what is "really" going on with Zipporrah. I am not a doctor and have not gone through as much as you have with your girls, but really think that she should be admitted given her history. Please keep us posted when you can and I hope for Zipporrah to get over this safely and quickly. Kerry Trachea ring/ER visit I all, I just got back from an ER with Zipporrah. She has pneumonia (and yet we were sent home!) and while there the x-ray revealed a trachea ring causing a narroing of her trachea. Something about a possible vessel causing it to indent. It could explain a lot of Zipporrah's breathing problems and other issues. I was wondering if anyone else has had this or know about the issue? This ER visit was another frustrating one as the doctor takes one look and thinks she is ok. Doesn't check O2 levels, doesn't give meds for the 103.2 degree temperature, no IV fluids, no hospitalization, and miscommunicates to Dr. Whiteman about several issues She has double ear infections, high temp., low urine output, less nursing, coughing and vomiting with lots of phlegm (right in from of the doc) and she says she doesn't think treatment is necessary. Only after seeing pneumonia did she offer antibiotics. I got a little rough and she gave me one that covered the gambit rather than a small antibiotic. What she really wanted to do was send her home with a NG-tube and knowing Porrah, who rubs and pulls her oxygen off, that wouldn't work, besides the coughing gagging would bring the tube back up or into the lungs and be a waste. Labs showed a high ammonia level (60, range was 9-35), low sodium, high glucose, low bun (3, range was 5-20), borderline Creatinine, anion gap of 14, & borderline CO2. Does this show anything significant? I feel I have to take care of her myself through the storm again. Last time they didn't listen she had a stroke and last time they didn't listen to me about Asenath she had 2 strokes (still unresolved issues today with both of them) Why do we have to be so nasty to get action for our kids?!!! Darla: mommy to Asenath, Zipporrah, and the gang Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 I know it is hard for many of you because your mito MD's are not close and you have no choice, but to go to an ER close to home. I feel so bad for you all when you talk about local hospitals not listening. I don't know if this helps or not, but here is my 2 cents. *When you child is ill at home call your mito MD and let them know what is going on. We do this to give them a heads up that they may be having to send orders to the ER at somepoint. * When you are heading off to the ER call again or have them paged ~tell them the hospital you are going to and maybe they will call in or fax labs. *Maybe if your mito MD has a letter drawn up about your child and how mito affects them and what to do during illness that could help (we could only wish for them to listen). We have had letters in the past that say even if the child is not dehydrated or not as sick as the ER md's think that they still need to follow the letter. *And lastly in a perfect world ER's would listen. I just ran into this last week when because of a snow storm we decided to go to an ER closer to home and they didn't get it. I told our mito nurse what we went through and that by the time you get your sick child to the hosp and then get beat up for the staff and questioned "Have you been told her really has mito or are they just testing her?", that you are so worn out that the ER staff make you start to even question yourself and start believeing they might be right. Darla: Did they check her for RSV? Brenna had RSV & Pneumonia at almost 2 yrs old ~ even though she was not a preemie, over the age of one year and had RSV in the past. I am sure things are crazy at your house, but if you get a chance maybe you should page or call Dr. Whiteman and tell him what is "really" going on with Zipporrah. I am not a doctor and have not gone through as much as you have with your girls, but really think that she should be admitted given her history. Please keep us posted when you can and I hope for Zipporrah to get over this safely and quickly. Kerry Trachea ring/ER visit I all, I just got back from an ER with Zipporrah. She has pneumonia (and yet we were sent home!) and while there the x-ray revealed a trachea ring causing a narroing of her trachea. Something about a possible vessel causing it to indent. It could explain a lot of Zipporrah's breathing problems and other issues. I was wondering if anyone else has had this or know about the issue? This ER visit was another frustrating one as the doctor takes one look and thinks she is ok. Doesn't check O2 levels, doesn't give meds for the 103.2 degree temperature, no IV fluids, no hospitalization, and miscommunicates to Dr. Whiteman about several issues She has double ear infections, high temp., low urine output, less nursing, coughing and vomiting with lots of phlegm (right in from of the doc) and she says she doesn't think treatment is necessary. Only after seeing pneumonia did she offer antibiotics. I got a little rough and she gave me one that covered the gambit rather than a small antibiotic. What she really wanted to do was send her home with a NG-tube and knowing Porrah, who rubs and pulls her oxygen off, that wouldn't work, besides the coughing gagging would bring the tube back up or into the lungs and be a waste. Labs showed a high ammonia level (60, range was 9-35), low sodium, high glucose, low bun (3, range was 5-20), borderline Creatinine, anion gap of 14, & borderline CO2. Does this show anything significant? I feel I have to take care of her myself through the storm again. Last time they didn't listen she had a stroke and last time they didn't listen to me about Asenath she had 2 strokes (still unresolved issues today with both of them) Why do we have to be so nasty to get action for our kids?!!! Darla: mommy to Asenath, Zipporrah, and the gang Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 I know it is hard for many of you because your mito MD's are not close and you have no choice, but to go to an ER close to home. I feel so bad for you all when you talk about local hospitals not listening. I don't know if this helps or not, but here is my 2 cents. *When you child is ill at home call your mito MD and let them know what is going on. We do this to give them a heads up that they may be having to send orders to the ER at somepoint. * When you are heading off to the ER call again or have them paged ~tell them the hospital you are going to and maybe they will call in or fax labs. *Maybe if your mito MD has a letter drawn up about your child and how mito affects them and what to do during illness that could help (we could only wish for them to listen). We have had letters in the past that say even if the child is not dehydrated or not as sick as the ER md's think that they still need to follow the letter. *And lastly in a perfect world ER's would listen. I just ran into this last week when because of a snow storm we decided to go to an ER closer to home and they didn't get it. I told our mito nurse what we went through and that by the time you get your sick child to the hosp and then get beat up for the staff and questioned "Have you been told her really has mito or are they just testing her?", that you are so worn out that the ER staff make you start to even question yourself and start believeing they might be right. Darla: Did they check her for RSV? Brenna had RSV & Pneumonia at almost 2 yrs old ~ even though she was not a preemie, over the age of one year and had RSV in the past. I am sure things are crazy at your house, but if you get a chance maybe you should page or call Dr. Whiteman and tell him what is "really" going on with Zipporrah. I am not a doctor and have not gone through as much as you have with your girls, but really think that she should be admitted given her history. Please keep us posted when you can and I hope for Zipporrah to get over this safely and quickly. Kerry Trachea ring/ER visit I all, I just got back from an ER with Zipporrah. She has pneumonia (and yet we were sent home!) and while there the x-ray revealed a trachea ring causing a narroing of her trachea. Something about a possible vessel causing it to indent. It could explain a lot of Zipporrah's breathing problems and other issues. I was wondering if anyone else has had this or know about the issue? This ER visit was another frustrating one as the doctor takes one look and thinks she is ok. Doesn't check O2 levels, doesn't give meds for the 103.2 degree temperature, no IV fluids, no hospitalization, and miscommunicates to Dr. Whiteman about several issues She has double ear infections, high temp., low urine output, less nursing, coughing and vomiting with lots of phlegm (right in from of the doc) and she says she doesn't think treatment is necessary. Only after seeing pneumonia did she offer antibiotics. I got a little rough and she gave me one that covered the gambit rather than a small antibiotic. What she really wanted to do was send her home with a NG-tube and knowing Porrah, who rubs and pulls her oxygen off, that wouldn't work, besides the coughing gagging would bring the tube back up or into the lungs and be a waste. Labs showed a high ammonia level (60, range was 9-35), low sodium, high glucose, low bun (3, range was 5-20), borderline Creatinine, anion gap of 14, & borderline CO2. Does this show anything significant? I feel I have to take care of her myself through the storm again. Last time they didn't listen she had a stroke and last time they didn't listen to me about Asenath she had 2 strokes (still unresolved issues today with both of them) Why do we have to be so nasty to get action for our kids?!!! Darla: mommy to Asenath, Zipporrah, and the gang Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 ((((((((Darla))))))) I just wanted to send you a big hug. We are thinking of you and praying for you daily. Keep fighting for what you need. It is exhausting, but you have it in you. Geri-Anne and Wyatt, complex I > I all, > I just got back from an ER with Zipporrah. She has pneumonia (and yet we were sent home!) and while there the x-ray revealed a trachea ring causing a narroing of her trachea. Something about a possible vessel causing it to indent. It could explain a lot of Zipporrah's breathing problems and other issues. I was wondering if anyone else has had this or know about the issue? > This ER visit was another frustrating one as the doctor takes one look and thinks she is ok. Doesn't check O2 levels, doesn't give meds for the 103.2 degree temperature, no IV fluids, no hospitalization, and miscommunicates to Dr. Whiteman about several issues. She has double ear infections, high temp., low urine output, less nursing, coughing and vomiting with lots of phlegm (right in from of the doc) and she says she doesn't think treatment is necessary. Only after seeing pneumonia did she offer antibiotics. I got a little rough and she gave me one that covered the gambit rather than a small antibiotic. What she really wanted to do was send her home with a NG-tube and knowing Porrah, who rubs and pulls her oxygen off, that wouldn't work, besides the coughing gagging would bring the tube back up or into the lungs and be a waste. Labs showed a high ammonia level (60, range was 9-35), low sodium, high glucose, low bun (3, range was 5-20), borderline Creatinine, anion gap of 14, & borderline CO2. Does this show anything significant? I feel I have to take care of her myself through the storm again. Last time they didn't listen she had a stroke and last time they didn't listen to me about Asenath she had 2 strokes (still unresolved issues today with both of them) Why do we have to be so nasty to get action for our kids?!!! > > Darla: mommy to Asenath, Zipporrah, and the gang Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 ((((((((Darla))))))) I just wanted to send you a big hug. We are thinking of you and praying for you daily. Keep fighting for what you need. It is exhausting, but you have it in you. Geri-Anne and Wyatt, complex I > I all, > I just got back from an ER with Zipporrah. She has pneumonia (and yet we were sent home!) and while there the x-ray revealed a trachea ring causing a narroing of her trachea. Something about a possible vessel causing it to indent. It could explain a lot of Zipporrah's breathing problems and other issues. I was wondering if anyone else has had this or know about the issue? > This ER visit was another frustrating one as the doctor takes one look and thinks she is ok. Doesn't check O2 levels, doesn't give meds for the 103.2 degree temperature, no IV fluids, no hospitalization, and miscommunicates to Dr. Whiteman about several issues. She has double ear infections, high temp., low urine output, less nursing, coughing and vomiting with lots of phlegm (right in from of the doc) and she says she doesn't think treatment is necessary. Only after seeing pneumonia did she offer antibiotics. I got a little rough and she gave me one that covered the gambit rather than a small antibiotic. What she really wanted to do was send her home with a NG-tube and knowing Porrah, who rubs and pulls her oxygen off, that wouldn't work, besides the coughing gagging would bring the tube back up or into the lungs and be a waste. Labs showed a high ammonia level (60, range was 9-35), low sodium, high glucose, low bun (3, range was 5-20), borderline Creatinine, anion gap of 14, & borderline CO2. Does this show anything significant? I feel I have to take care of her myself through the storm again. Last time they didn't listen she had a stroke and last time they didn't listen to me about Asenath she had 2 strokes (still unresolved issues today with both of them) Why do we have to be so nasty to get action for our kids?!!! > > Darla: mommy to Asenath, Zipporrah, and the gang Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 ((((((((Darla))))))) I just wanted to send you a big hug. We are thinking of you and praying for you daily. Keep fighting for what you need. It is exhausting, but you have it in you. Geri-Anne and Wyatt, complex I > I all, > I just got back from an ER with Zipporrah. She has pneumonia (and yet we were sent home!) and while there the x-ray revealed a trachea ring causing a narroing of her trachea. Something about a possible vessel causing it to indent. It could explain a lot of Zipporrah's breathing problems and other issues. I was wondering if anyone else has had this or know about the issue? > This ER visit was another frustrating one as the doctor takes one look and thinks she is ok. Doesn't check O2 levels, doesn't give meds for the 103.2 degree temperature, no IV fluids, no hospitalization, and miscommunicates to Dr. Whiteman about several issues. She has double ear infections, high temp., low urine output, less nursing, coughing and vomiting with lots of phlegm (right in from of the doc) and she says she doesn't think treatment is necessary. Only after seeing pneumonia did she offer antibiotics. I got a little rough and she gave me one that covered the gambit rather than a small antibiotic. What she really wanted to do was send her home with a NG-tube and knowing Porrah, who rubs and pulls her oxygen off, that wouldn't work, besides the coughing gagging would bring the tube back up or into the lungs and be a waste. Labs showed a high ammonia level (60, range was 9-35), low sodium, high glucose, low bun (3, range was 5-20), borderline Creatinine, anion gap of 14, & borderline CO2. Does this show anything significant? I feel I have to take care of her myself through the storm again. Last time they didn't listen she had a stroke and last time they didn't listen to me about Asenath she had 2 strokes (still unresolved issues today with both of them) Why do we have to be so nasty to get action for our kids?!!! > > Darla: mommy to Asenath, Zipporrah, and the gang Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Darla, First of all, I am sorry that Porrah is feeling so bad. Secondlyt I am sorry that you all havew to go through this. I have been to the Er and had problems more times than I can count. The last itme was in the Er the resident told me 's doc said we could go home. I refused and put up a stink and she called the doc again and was admitted. Before she was even in her room , her fever was 105 and her hr was 180. That would've happened about the time I would've pulled into my driveway. Anyways when it was said and done I talked to the doc and that is not what she said. She told me from now on when we are in the ER, I am to tell the nurse I have to go to the bathroom. Find thje nearest payphone and page her directly. This way we can communicate before we leave and avoid any miscommunication. I hope it all works out and Poorah feels better soon. I would call Dr.Whiteman myself and let him know your concerns now and make sure he is okay without her being admitted. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Darla, First of all, I am sorry that Porrah is feeling so bad. Secondlyt I am sorry that you all havew to go through this. I have been to the Er and had problems more times than I can count. The last itme was in the Er the resident told me 's doc said we could go home. I refused and put up a stink and she called the doc again and was admitted. Before she was even in her room , her fever was 105 and her hr was 180. That would've happened about the time I would've pulled into my driveway. Anyways when it was said and done I talked to the doc and that is not what she said. She told me from now on when we are in the ER, I am to tell the nurse I have to go to the bathroom. Find thje nearest payphone and page her directly. This way we can communicate before we leave and avoid any miscommunication. I hope it all works out and Poorah feels better soon. I would call Dr.Whiteman myself and let him know your concerns now and make sure he is okay without her being admitted. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Darla, First of all, I am sorry that Porrah is feeling so bad. Secondlyt I am sorry that you all havew to go through this. I have been to the Er and had problems more times than I can count. The last itme was in the Er the resident told me 's doc said we could go home. I refused and put up a stink and she called the doc again and was admitted. Before she was even in her room , her fever was 105 and her hr was 180. That would've happened about the time I would've pulled into my driveway. Anyways when it was said and done I talked to the doc and that is not what she said. She told me from now on when we are in the ER, I am to tell the nurse I have to go to the bathroom. Find thje nearest payphone and page her directly. This way we can communicate before we leave and avoid any miscommunication. I hope it all works out and Poorah feels better soon. I would call Dr.Whiteman myself and let him know your concerns now and make sure he is okay without her being admitted. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 I did actually call Dr. Whiteman before and after the visit to ER. I think the doctor may have confused Dr. Whiteman as to the severity though because she felt Porrah was doing " well?! " I did get a protocall of blood work from him to take to ER and they did " some " of them. They needed to poke her twice to just get that much. I did ask Dr. Whiteman's secretary to draw up a protocall for future ER trips so they know what to do and WHY. Asenath has never looked dehydrated even when she doesn't put urine out and Porrah seems to be the same, yet they still get very cranky, sleep tons, wheeze, and have strokes. They have to be quite bad before they " look " bad. The sad thing is the docs just don't take me seriously, thinking they know best, and my kids pay for it. I think they need the IV to prevent strokes and to help them get over the hump. They don't agree. Also, I asked if they would check for RSV as that is what she had at 5 weeks and caused similar symptoms and resulted in her flet- sided stroke episode. The doc felt it UNNECESSARY! So, home we are without any help. Thanks for your words of advise though. I was thinking the same thing all day! Darla: mommy to Asenath, Zipporrah, and the gang > > > > Please contact mito-owner with any problems or > questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 I did actually call Dr. Whiteman before and after the visit to ER. I think the doctor may have confused Dr. Whiteman as to the severity though because she felt Porrah was doing " well?! " I did get a protocall of blood work from him to take to ER and they did " some " of them. They needed to poke her twice to just get that much. I did ask Dr. Whiteman's secretary to draw up a protocall for future ER trips so they know what to do and WHY. Asenath has never looked dehydrated even when she doesn't put urine out and Porrah seems to be the same, yet they still get very cranky, sleep tons, wheeze, and have strokes. They have to be quite bad before they " look " bad. The sad thing is the docs just don't take me seriously, thinking they know best, and my kids pay for it. I think they need the IV to prevent strokes and to help them get over the hump. They don't agree. Also, I asked if they would check for RSV as that is what she had at 5 weeks and caused similar symptoms and resulted in her flet- sided stroke episode. The doc felt it UNNECESSARY! So, home we are without any help. Thanks for your words of advise though. I was thinking the same thing all day! Darla: mommy to Asenath, Zipporrah, and the gang > > > > Please contact mito-owner with any problems or > questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 I did actually call Dr. Whiteman before and after the visit to ER. I think the doctor may have confused Dr. Whiteman as to the severity though because she felt Porrah was doing " well?! " I did get a protocall of blood work from him to take to ER and they did " some " of them. They needed to poke her twice to just get that much. I did ask Dr. Whiteman's secretary to draw up a protocall for future ER trips so they know what to do and WHY. Asenath has never looked dehydrated even when she doesn't put urine out and Porrah seems to be the same, yet they still get very cranky, sleep tons, wheeze, and have strokes. They have to be quite bad before they " look " bad. The sad thing is the docs just don't take me seriously, thinking they know best, and my kids pay for it. I think they need the IV to prevent strokes and to help them get over the hump. They don't agree. Also, I asked if they would check for RSV as that is what she had at 5 weeks and caused similar symptoms and resulted in her flet- sided stroke episode. The doc felt it UNNECESSARY! So, home we are without any help. Thanks for your words of advise though. I was thinking the same thing all day! Darla: mommy to Asenath, Zipporrah, and the gang > > > > Please contact mito-owner with any problems or > questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Darla: Last time Brenna was diagnosed with pneumonia they put her on meds and were wondering why the fever kept hanging on ~ then they tested her for the RSV and she had that also. Hang in there ~ Kerry -----Original Message-----From: Darla Klein Sent: Wednesday, March 24, 2004 5:42 PMTo: Mito Subject: Re: Trachea ring/ER visit I did actually call Dr. Whiteman before and after the visit to ER. I think the doctor may have confused Dr. Whiteman as to the severity though because she felt Porrah was doing "well?!" I did get a protocall of blood work from him to take to ER and they did "some" of them. They needed to poke her twice to just get that much. I did ask Dr. Whiteman's secretary to draw up a protocall for future ER trips so they know what to do and WHY. Asenath has never looked dehydrated even when she doesn't put urine out and Porrah seems to be the same, yet they still get very cranky, sleep tons, wheeze, and have strokes. They have to be quite bad before they "look" bad. The sad thing is the docs just don't take me seriously, thinking they know best, and my kids pay for it. I think they need the IV to prevent strokes and to help them get over the hump. They don't agree. Also, I asked if they would check for RSV as that is what she had at 5 weeks and caused similar symptoms and resulted in her flet-sided stroke episode. The doc felt it UNNECESSARY! So, home we are without any help. Thanks for your words of advise though. I was thinking the same thing all day!Darla: mommy to Asenath, Zipporrah, and the gang > > > > Please contact mito-owner with any problems or> questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi Darla, Bunch of stuff jumps out at me: high amonia levels and other labs means she is in acidosis already, don't know if they checked lactic acid but I'd hydrate her the best I can and DEFINITELY give her ibuprophen to get that fever down ASAP as fever is extremely dangerous for mito kids, even a low grade fever. I'd also get her in to see the neurologist if yours is nearby (whoever treats the mito). Sponge the fever down if need be. The tracheal thing: my kid (and her mito brother) both had "tracheal malacia" as young babies/children till about age 5, which is a condition of softened tracheal rings which cause or at least allow the trachea to collapse under stress. I never related it to the mito and my daughter did outgrow it (her brother didn't survive but didn't die from mito at age 4) but it was touch and go on many occasions. I'm sorry you have to go through all this with so little support from the doctors who are supposed to be helping you. My prayers are with you for courage and strength. kj mom to De-Arbra age 16 Quote Link to comment Share on other sites More sharing options...
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