Pamela H in Texas Posted July 29, 2012 Share Posted July 29, 2012 AMA can be no insurance coverage, be careful. Sounds like you decided to keep her there afterall. I just wanted to warn that AMA is also a CPS investigation waiting to happen. It doesn't happen most of the time, I'm sure, because it probably isn't necessary for it to; however, it can and does happen. Unless your intention is another hospital or doctor or something (and that needs to be IMMEDIATE), then you could really be opening yourself up for something Quote Link to comment Share on other sites More sharing options...
elegantlion Posted July 29, 2012 Share Posted July 29, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Caroline Posted July 29, 2012 Share Posted July 29, 2012 :grouphug: I hope things look better on the other side of sleep. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted July 29, 2012 Share Posted July 29, 2012 (edited) :grouphug: Well, may be the Lyme titer is a good thing. :iagree::iagree: My ds was sick for 18 months with all sorts of craziness from Lyme before he started to get better. I think it just blows the immune system to cr@p and everything that passes by is caught and magnified. :grouphug::grouphug::grouphug: to you and dd! I am surprised they did not put in an IV...with fluids....and draw blood from that. Did I miss something? :grouphug: and prayers for a quick recovery! Edited July 29, 2012 by Mommyfaithe Quote Link to comment Share on other sites More sharing options...
6wishes Posted July 29, 2012 Share Posted July 29, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Parrothead Posted July 29, 2012 Author Share Posted July 29, 2012 It might be worth it to just take a breather for a little while and refocus. It won't do your family any good if you get labeled as nuts. Then they will start looking for reasons other than the Lymes for DD12's illness. With the unusual care you have to give DD9 the last thing you want is some nosy Parker deciding you have Munchhausen Proxy Syndrome or something. Get a pen and a notebook/journal. Keep your own chart of what is going on with DD12. Write everything down - Date, time, symptom, body part affected, food intake, output if you can measure or guestimate. Everything. Read the labels on her IV and write that info down. You have a right to know what they shoot into her IV port. As and have them spell it out for you or let you see the label. Let the doctors where you are get DD12 stable. While they aren't around call CHOP or Mayo or Boston or where ever you can find a Lyme's specialist. Get DD12 an appointment or a bed. At that point you can have her transferred. :grouphug: Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted July 29, 2012 Share Posted July 29, 2012 It might be worth it to just take a breather for a little while and refocus. It won't do your family any good if you get labeled as nuts. Then they will start looking for reasons other than the Lymes for DD12's illness. With the unusual care you have to give DD9 the last thing you want is some nosy Parker deciding you have Munchhausen Proxy Syndrome or something. Get a pen and a notebook/journal. Keep your own chart of what is going on with DD12. Write everything down - Date, time, symptom, body part affected, food intake, output if you can measure or guestimate. Everything. Read the labels on her IV and write that info down. You have a right to know what they shoot into her IV port. As and have them spell it out for you or let you see the label. Let the doctors where you are get DD12 stable. While they aren't around call CHOP or Mayo or Boston or where ever you can find a Lyme's specialist. Get DD12 an appointment or a bed. At that point you can have her transferred. :grouphug: :iagree: if you want to go the CHOP route, here is the number to call. http://www.chop.edu/service/emergency-transport/how-to-arrange-a-transport.html :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 29, 2012 Share Posted July 29, 2012 (edited) The dr who saw dd this morning was very good and very thirough according to dh. She is concerned and said that dd is no where near ready to go home. She said that there are six other kids with this virus but dd is the sickest, her throat looks the worst, she is the weakest, her fever spikes are the highest. The is ordering dd some miso soup from a chinese restaurant and is encouraging broths for her. She said she needs dd to start to eat more so she is decreasing the IV fluids. Can they take blood from the IV site after the IV has been i serted? I don't think they can, right? And whoever asked why they didn't take blood when they dud the IV, they took some but dd was so dehydrated that it just barely dripped out. They couldn't get enough. No, i won't be removing her from the hospital. It is good that I removed myself. And i will sleep at home tonight. The dr is very concerned for dd. She will be consulting an infectious disease specialist today. She also asked a LOT of questions about her volunteer work at the retirement home, does she serve food there, etc. She asked a lot of questions about our farm and dd's involvement with that. I feel hopeful that this dr is concerned(because ifone more person downplays her very serious symptoms I just might go insane) dh forgot to mention the changes in color :svengo: but I had him run and tell the dr right away. My fear is that this dr, like all he others, is going to hit a wall, run out of ideas, then downplay it all and brush us off. That is the pattern. I started the CHOP discussion with dh but need far more sleep to continue it at this point. I am getting ready to head in shortly. Edited July 30, 2012 by Denisemomof4 Quote Link to comment Share on other sites More sharing options...
mjtsmami Posted July 29, 2012 Share Posted July 29, 2012 praying that maybe this dr is the one who doesn't brush you off and you get some answers. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted July 29, 2012 Share Posted July 29, 2012 I'm glad you have a doctor today who appears to be taking your DD's condition seriously, hoping for a breakthrough. :grouphug: Quote Link to comment Share on other sites More sharing options...
k2bdeutmeyer Posted July 29, 2012 Share Posted July 29, 2012 praying that maybe this dr is the one who doesn't brush you off and you get some answers. This! Quote Link to comment Share on other sites More sharing options...
Caroline Posted July 29, 2012 Share Posted July 29, 2012 I hope this doctor sticks with you all. Good luck. Quote Link to comment Share on other sites More sharing options...
QuirkyKapers Posted July 29, 2012 Share Posted July 29, 2012 :grouphug::grouphug::grouphug:Hope this doctor continues to try and figure out what is going on. Quote Link to comment Share on other sites More sharing options...
jujsky Posted July 29, 2012 Share Posted July 29, 2012 :grouphug::grouphug: My thoughts are with you & yours, Denise. Quote Link to comment Share on other sites More sharing options...
AlmiraGulch Posted July 29, 2012 Share Posted July 29, 2012 Like everyone else here, I'm following your story closely and hoping for some answers for you quickly. Take care of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 29, 2012 Share Posted July 29, 2012 (edited) Sounds like you have someone who thinks like a scientist -- that is a good thing. Continue to re-charge your batteries. You are all in my thoughts and prayers. Hang in there -- choose your battles, say less not more, and bounce your ideas off of your dh not the medical staff. And, be kind to yourself....rest, eat, take some time away from the hospital. :grouphug::grouphug::grouphug: Edited July 30, 2012 by MariannNOVA Quote Link to comment Share on other sites More sharing options...
justLisa Posted July 29, 2012 Share Posted July 29, 2012 Thinking of you both. I'm glad you are getting some sleep :grouphug: Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted July 29, 2012 Share Posted July 29, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted July 29, 2012 Share Posted July 29, 2012 Still praying here. I'm glad the newest doctor seems concerned and thorough. Denise, are you and your dh planning to take shifts at the hospital so one of you can be with your dd 24/7? It sounds like that's what you're doing, so I'm wondering if the hospital has any rooms for your dd with a sofa or an extra cot that whomever stays the night can use to get a bit of rest. I know what it's like to spend 24/7 in the hospital (when my mom was ill,) and after a week of it, I was fried, and by the time she finally got out of the hospital, I think I was pretty much in a daze. The only thing that saved my sanity and my health was that my dad and I took turns staying overnight. Quote Link to comment Share on other sites More sharing options...
Impish Posted July 29, 2012 Share Posted July 29, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted July 29, 2012 Share Posted July 29, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
LeslieAnneLevine Posted July 29, 2012 Share Posted July 29, 2012 I'm glad that you're able to get a break from the hospital and get some rest. Huge :grouphug: to all of you. I am really hoping this dr. will get you some answers. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 29, 2012 Share Posted July 29, 2012 Sounds like you have someone who thinks like a scientist -- that is a good thing. Continue to re-charge your batteries. You are all in my thoughts and prayers. The skin discoloration and mottling were all things that dd experienced before we knew we were dealing with lymes. They were all a part of the lymes and years later (like 6 months ago) we learned ehlers-danlos. It took an infectious disease/rheumatologist to finally figure it out for us -- a good one as the first three we saw over a period of many years, missed it. Hang in there -- choose your battles, say less not more, and bounce your ideas off of your dh not the medical staff. And, be kind to yourself....rest, eat, take some time away from the hospital. :grouphug::grouphug::grouphug: Does your dd have the stretchy, elastic skin? I don't remember what else I read last night. Last night I was thinking RA? nah, that's not it. I didn't realize it could also be vascular. Thanks for pointing that out.... Another ball to get rolling on. I also wonder how much of all of this is complicated due to the lymes. The infectious disease specialist doesn't think she can help at this point but says that may change. I will be going home to sleep tonight and dh will be here. A thrree hour nap already did wnders. :grouphug: Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 29, 2012 Share Posted July 29, 2012 (edited) I think you need a pediatric rheumatologist. Edited July 30, 2012 by MariannNOVA Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 29, 2012 Share Posted July 29, 2012 :grouphug::grouphug::grouphug: I think you need a pediatric rheumatologist. I definitely will investigate this. I hope to speak to the dr about this before she leaves. If there is anything good to report at all right now, since the floor is mostly empty now (I think two beds are occupied) it's not as busy. I noticed dd looked beet red on her entire body so I ran and got her nurse, who immediately came to see. She literally watched it fade before her eyes in minutes. A bit later I ran to get dd's sorbet out of the freezer and I heard her talking about it. She, too, was shocked to see this. In almost eight years nobody has witnessed the skin coloring I have been so distraught about. I almost cried. Quote Link to comment Share on other sites More sharing options...
Parrothead Posted July 29, 2012 Author Share Posted July 29, 2012 I definitely will investigate this. I hope to speak to the dr about this before she leaves. If there is anything good to report at all right now, since the floor is mostly empty now (I think two beds are occupied) it's not as busy. I noticed dd looked beet red on her entire body so I ran and got her nurse, who immediately came to see. She literally watched it fade before her eyes in minutes. A bit later I ran to get dd's sorbet out of the freezer and I heard her talking about it. She, too, was shocked to see this. In almost eight years nobody has witnessed the skin coloring I have been so distraught about. I almost cried. Thank the Lord someone in the medical community saw it. Quote Link to comment Share on other sites More sharing options...
k2bdeutmeyer Posted July 29, 2012 Share Posted July 29, 2012 Thank the Lord someone in the medical community saw it. Yes!! I'm so glad you were able to get someone in to see it! Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 29, 2012 Share Posted July 29, 2012 (edited) I definitely will investigate this. I hope to speak to the dr about this before she leaves. If there is anything good to report at all right now, since the floor is mostly empty now (I think two beds are occupied) it's not as busy. I noticed dd looked beet red on her entire body so I ran and got her nurse, who immediately came to see. She literally watched it fade before her eyes in minutes. A bit later I ran to get dd's sorbet out of the freezer and I heard her talking about it. She, too, was shocked to see this. In almost eight years nobody has witnessed the skin coloring I have been so distraught about. I almost cried. I am so glad that someone was able to witness it -- I pray it sends them searching in the right direction. :grouphug::grouphug::grouphug: Edited July 30, 2012 by MariannNOVA Quote Link to comment Share on other sites More sharing options...
Twigs Posted July 30, 2012 Share Posted July 30, 2012 … I noticed dd looked beet red on her entire body so I ran and got her nurse, who immediately came to see. She literally watched it fade before her eyes in minutes. A bit later I ran to get dd's sorbet out of the freezer and I heard her talking about it. She, too, was shocked to see this. In almost eight years nobody has witnessed the skin coloring I have been so distraught about. I almost cried. :grouphug::grouphug::grouphug: It's good that the nurse was able to witness this. Are you sure she made a note in the chart? If at all possible, I think you should ask to see for yourself that it was actually documented and even ask for a copy for yourself. Best wishes. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 30, 2012 Share Posted July 30, 2012 My dh is staying with dd tonight so I can sleep and gain mental clarity. If O have any. Dh just texted me (i made him promise he would) to tell me dd's legs turned purp,e with deep plum knees so he ran and got the nurse. Second time someone else saw. It took eight years for this. , Please hope and pray along with me that this is the beginning to a diagnosis and healing. Mariann, I definitely want dd to see a PR. A nurse made sure I was going to tonight, and it wad just another confirmation to me that we needed to investigate this. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 30, 2012 Share Posted July 30, 2012 My dh is staying with dd tonight so I can sleep and gain mental clarity. If O have any.Dh just texted me (i made him promise he would) to tell me dd's legs turned purp,e with deep plum knees so he ran and got the nurse. Second time someone else saw. It took eight years for this. , Please hope and pray along with me that this is the beginning to a diagnosis and healing. Mariann, I definitely want dd to see a PR. A nurse made sure I was going to tonight, and it wad just another confirmation to me that we needed to investigate this.[/QUOTE] I cannot tell you how happy I am that someone else saw the discoloration besides you -- your dd's face and knees! I am so thrilled that what you have witnessed has been confirmed. Praise G-d!:grouphug::grouphug::grouphug: Thoughts and prayers that you are all on the correct path -- I think a PR is the way to go. I have the name of a renowned geneticist if you need it.:grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 30, 2012 Share Posted July 30, 2012 My dh is staying with dd tonight so I can sleep and gain mental clarity. If O have any.Dh just texted me (i made him promise he would) to tell me dd's legs turned purp,e with deep plum knees so he ran and got the nurse. Second time someone else saw. It took eight years for this. , Please hope and pray along with me that this is the beginning to a diagnosis and healing. Mariann, I definitely want dd to see a PR. A nurse made sure I was going to tonight, and it wad just another confirmation to me that we needed to investigate this.[/QUOTE] I cannot tell you how happy I am that someone else saw the discoloration besides you -- your dd's face and knees! I am so thrilled that what you have witnessed has been confirmed. Praise G-d!:grouphug::grouphug::grouphug: Thoughts and prayers that you are all on the correct path -- I think a PR is the way to go. I have the name of a renowned geneticist if you need it.:grouphug::grouphug::grouphug: Why did you take your dd to a geneticist? I habe been thinking about this all night. I am wondering if I should do the same. Quote Link to comment Share on other sites More sharing options...
Dolphin Posted July 30, 2012 Share Posted July 30, 2012 My dh is staying with dd tonight so I can sleep and gain mental clarity. If O have any.Dh just texted me (i made him promise he would) to tell me dd's legs turned purp,e with deep plum knees so he ran and got the nurse. Second time someone else saw. It took eight years for this. , Please hope and pray along with me that this is the beginning to a diagnosis and healing. Mariann, I definitely want dd to see a PR. A nurse made sure I was going to tonight, and it wad just another confirmation to me that we needed to investigate this. :grouphug::grouphug::grouphug: I am praying this is a blessing in disguise and leads you to answers and healing. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 30, 2012 Share Posted July 30, 2012 Why did you take your dd to a geneticist? I habe been thinking about this all night. I am wondering if I should do the same.[/quote When the rheumatologist suspected what he did (I'm going to stop typing the name of it as this is a public place), because it is a genetic thing, he sent her to a geneticist for diagnosis and treatment. Denise, she is for the first time 8 years, back to being her same vibrant energetic healthy self. It's an answer to prayer. Quote Link to comment Share on other sites More sharing options...
besroma Posted July 30, 2012 Share Posted July 30, 2012 :grouphug: and prayers Quote Link to comment Share on other sites More sharing options...
mjtsmami Posted July 30, 2012 Share Posted July 30, 2012 SO thankful that her discoloration has been seen twice now. I'm praying that you guys are finally going to be blessed with some answers and help. Quote Link to comment Share on other sites More sharing options...
swellmomma Posted July 30, 2012 Share Posted July 30, 2012 I don't think I have ever been so happy that someone's child turned beet red or purple, but I am so very very glad she did and that both times it was witnessed. That will go a long way in getting her help rather than them writing you off as nuts. Quote Link to comment Share on other sites More sharing options...
sunnylady303 Posted July 30, 2012 Share Posted July 30, 2012 I just wanted to let you know that you have been on my heart the last few days. I have prayed for you several times daily. My DD has spent so much time in the hospital and it sucks you dry. Also advocating for your child, poor food, worry - all of that is exhausting in ways that can't fully be explained. My DD occasionally passed out from her severe lung problems. She only ever did it in front of me. I don't think anyone believed me. I felt so alone. Finally (after two years and a lot of dismissive doctors) a nurse witnessed it. I was so elated and it did help things turn in her care. It is so painful and maddening to be dismissed as you try to get the best care possible. Just know that some random woman in KY is with you in spirit and praying and thinking of you and your whole family and sending you strength. :001_wub: Quote Link to comment Share on other sites More sharing options...
cin Posted July 30, 2012 Share Posted July 30, 2012 My dh is staying with dd tonight so I can sleep and gain mental clarity. If O have any.Dh just texted me (i made him promise he would) to tell me dd's legs turned purp,e with deep plum knees so he ran and got the nurse. Second time someone else saw. It took eight years for this. , Please hope and pray along with me that this is the beginning to a diagnosis and healing. Mariann, I definitely want dd to see a PR. A nurse made sure I was going to tonight, and it wad just another confirmation to me that we needed to investigate this. Whatever it takes, suck up to those nurses. And I mean that in the kindest way. They see EVERYTHING. And they know which doctors are good and which ones.....aren't. They are one of the keys to getting dd better. I like that the doctor ordered Miso Soup. That is a very 'outside the box' choice. That may be an indicator that he is a thinker, and may also have some nutrition/alternative medicine experience. Also, someone mentioned taking your daughter out AMA can become a CPS thing, remember, we are already a bit weird because we homeschool :D so do be careful. Prayers and hugs. And wishing you were closer to Cincinnati so I could help you out some. Quote Link to comment Share on other sites More sharing options...
TheReader Posted July 30, 2012 Share Posted July 30, 2012 Praying! One of my sons dehydrates super fast like that. No fever, and less than 12 hrs of throwing up and he needs IV fluids. They actually told us last time to not force water other than the teeniest sips so that it's not triggering his vomiting, and they did give us an Rx last time of some wonder-pill he can take at the first sign which stops it in its tracks. We keep a standing supply of this just in case. ((((hugs for your girl and you))))) Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 30, 2012 Share Posted July 30, 2012 You guys are really awesome. ALL of you!!! The nurse again saw the color change in dd last night. So now the deep red sunburn on her entire body, the purple legs with pkum knees, AND the way she gets the most exotic, DARK, tropical tan for a few minutes have ALL been witnessed by a nurse. The same nurse saw all three of these. I will be getting her name and a copy of her notes to put in dd's file. Dd's last motrin dose for fever was at midnight. She still has no fever now at 9:00 so i think this is it!!!!!!!! Her pattern is for her fever to peak at eight hours. We are requesting that dd be allowed to stay until 6:00 when the dr we love comes in..... Assuming, of course, that she will be released today. Thank you all SO MUCH. Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted July 30, 2012 Share Posted July 30, 2012 Hi Sweetie--so glad things are improving. I didn't make it to prayer this am as hubby is OOT visiting DS in Asheville for a few days. I already have to leave dd home while I walk doggies, so I decided to stay here. Still praying, tho. Glad you have good news!! Quote Link to comment Share on other sites More sharing options...
Parrothead Posted July 30, 2012 Author Share Posted July 30, 2012 Well, maybe this whole episode was an answer to a prayer. Now they know you aren't nuts. :grouphug: Quote Link to comment Share on other sites More sharing options...
TammyinTN Posted July 30, 2012 Share Posted July 30, 2012 :iagree: Hang in there! :grouphug: Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted July 30, 2012 Share Posted July 30, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
LittleIzumi Posted July 30, 2012 Share Posted July 30, 2012 The dr who saw dd this morning was very good and very thirough according to dh. She is concerned and said that dd is no where near ready to go home. She said that there are six other kids with this virus but dd is the sickest, her throat looks the worst, she is the weakest, her fever spikes are the highest. The is ordering dd some miso soup from a chinese restaurant and is encouraging broths for her. She said she needs dd to start to eat more so she is decreasing the IV fluids. Just FYI, later in this quoted post it looks like you typed your daughter's name, so if you don't want that on the Internet, you might want to delete it. I am SO glad a nurse was able to witness the color changes, and you got an outside-the-box doc, and that your dd is feeling better!!! YAY!!!!! Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 30, 2012 Share Posted July 30, 2012 You guys are really awesome. ALL of you!!! The nurse again saw the color change in dd last night. So now the deep red sunburn on her entire body, the purple legs with pkum knees, AND the way she gets the most exotic, DARK, tropical tan for a few minutes have ALL been witnessed by a nurse. The same nurse saw all three of these. I will be getting her name and a copy of her notes to put in dd's file. Dd's last motrin dose for fever was at midnight. She still has no fever now at 9:00 so i think this is it!!!!!!!! Her pattern is for her fever to peak at eight hours. We are requesting that dd be allowed to stay until 6:00 when the dr we love comes in..... Assuming, of course, that she will be released today. Thank you all SO MUCH. I am so relieved for you that someone on staff has seen what you have been seeing. Also incredibly thankful for dd's normal temp. :grouphug::grouphug::grouphug: and prayers continuing. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 30, 2012 Share Posted July 30, 2012 Just FYI, later in this quoted post it looks like you typed your daughter's name, so if you don't want that on the Internet, you might want to delete it. Thanks!!! DD LOOKS FANTASTIC!!!!!!!:party: She is weak but she is acting more like herself!!!!! The IV is out!!!!! Still no word on whether she will be released today ir not. She needs to be able to eat ad drink more for sure. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 30, 2012 Share Posted July 30, 2012 Thanks!!! DD LOOKS FANTASTIC!!!!!!!:party: She is weak but she is acting more like herself!!!!! The IV is out!!!!! Still no word on whether she will be released today ir not. She needs to be able to eat ad drink more for sure. Baby steps -- slow and steady!:) Quote Link to comment Share on other sites More sharing options...
elfgivas Posted July 30, 2012 Share Posted July 30, 2012 oh my..... breathing easier, much easier. Very Big Smile. remember you meant to get a copy of the nurse's notes and her name :001_smile:. (i forget things when i'm sleep deprived and emotional. my dc would tell you i forget things all the time, which is, actually, true.;)) ann Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.